Dla part 10

[Patientlywaitingx2]

Called up today and the wait gets pushed back further and further has anyone been awarded recently

Ho my GP gave it my son after talking to Peds he was only on 5ml this is what is worrying me about the high dose I am going to call Peds secretary tomorrow

I got told first time I asked that they couldn't but kept ringing as her sleep was awful she just didn't sleep and still doesn't tbh they sent a email or phone call to the pediatricians and they okayed it even tho she hasn't seen a pediatrician yet still awaiting a appointment they've only gave her 2 or 3mg and it's not doing anything atall I've asked for a repeat prescription for her but requested if she can have a higher dose so not sure yet if they have to get permission or not or can just prescribe a higher dose but she's awake until between 1-3am every night without fail .

Thankyou for this it was me who asked that. Yes I think my sons nursery are also eagerly awaiting too

@chuggins our children are seen as business sometimes and the more funding that comes with them the more attracted they are to help them. But you never know where your child's funding is spent and for me that's the biggest flaw. You can only assume they are using the money to help

No I completely agree. The only thing that keeps me positive is that the nursery are fully supportive and I do genuinely think it would be spent on my sons care Just fingers crossed for the decision outcome from the DLa. Scan date 13/01/23 so still a good 5 weeks wait for me yet.

I hope you guys get some luck today 🩷

I'm on a complete downer. Life is so hard at the moment. Just constantly calling so many services and getting no where or just waiting. Even my meds aren't shifting this today. Currently on waiting to someone about my sons EHCP draft where a decision is being made tomorrow on whether or not they will assess. Yet I've only just been able to add information as of this morning. 29 minutes waiting so far, Number 5 in the queue

Had a meeting at the school about yesterday exclusion this morning too. That's enough adulting for today thanks

*currently on hold waiting to speak to someone

Hi I called the peds secretary she says it's 7.5 ml for one week then 10ml to see how he goes just going to see how he is on 7.5 ml as I think it's alot for him

I've rung today and been told mine is with a case manager and has been for 2 days, I don't know if that makes me feel uneasy with them already having it 2 days and still heard nothing. Scan date 21/12

So was told by one of the local housing companies last week i would only need a doctors note to explain why daughter needs her own bedroom and today I've asked again to make sure before I make the payment up front for the doctors note and they've said they follow government guidelines and we need a consultant letter which is stressful because she hasn't had her pediatrician appointment yet and xould be waiting a long time for it .. its so stressful all this feel like I'm going in circles trying to help support My daughter as much as I can and I just feel like I'm failing .. I contacted koala North west also for help and support about her behaviour and they haven't even got back to me

Scan date 05/01

Called today to see if it was with a DM as of yet, she said not yet but should be at the start of April.

I know I've been waiting a lot less than some of you on here but, as we know, the wait is stressful!

@Supermom92 that's better than here. I need a DLA of MRC or HRC plus an OT assessment to say he needs his own room. The wait list is 10 months long currently for that!! Even then we only go on as lacking a bedroom. His actual needs aren't taken into consideration. Only the bedroom need

He's on the pathway for ASD and ADHD. He's sensory overload and presents as PDA too

Im on highest dose of anxiety meds but my mental health isn't bad enough to be taken into consideration... apparently

That's terrible you have to get MRC or HRC to be eligible it's like they don't care or so it feels that way its not us they are messing about its our children we only want what's best for them . Struggling with my mental health myself tbh been on sertraline since January I refused medication for 6 months because I was in denial but things have been getting worse with my daughter and I'm struggling with everything I don't feel there is enough support for parents out there always feel like on my own . Someone mentioned to me today that disability social services may be able to help so I might give them a call tomorrow and see what they say

@CheesePlease33 hi are you ringing back again this week or just leaving it til mon/Tuesday to see the outcome?

@Boymom10 I had a txt yesterday morning saying my son had been awarded!! So I called and was advised its been renewed for another 2 years, MRC and LRM again!! :)

@CheesePlease33 awww wow that’s great news so pleased for you and to have a text aswell 😊 oh great ii had the whole speech of it’s not going to be done until the day 😢

@Boymom10 keep ringing them. I swear the more you ring them the quicker they do it!! Good luck :)

Does anyone no if we want to send further evidence does it add more time onto the claim before they look ? Or will it be placed with the information they already have if that makes sense ?

Or can we phone and tell them and they'll make a note ? X

I sent in further evidence they just scan it on to be used alongside the claim - took about 3 weeks to scan though
scan date 19/01 was told this week looking at over 15 weeks wait in total

Scan date 22/12/22 I still haven't phoned for an update, I'm a nervous phone speaker 🤣
Anyone around this date heard anything?

Just ring up. Mine was 19/12 he got awarded monday same day

@Brown2010 how you getting on? Have you heard anything yet?

@Snickerdoodles19 not heard a thing .. so it ends the 31st (next Friday) should I ring tomorrow or Monday 😫🤷🏻‍♀️ Xx

@Brown2010 id ring tomorrow just to see what’s going on if still not with a dm then I’d leave it until the day before it runs out x