Page 15 | DLA WAIT TIME THREAD 42

Persianpoppy · 09/05/2024 19:42

Matilde08 · 09/05/2024 17:36

There are some more empathetic call handlers too. I guess I'm shutting down my emotional side when calling them as I know if I burst out, I will start to cry and they will hear more than they should about my own mental problems,.. PTSD..etc and I will turn into mess 🫣😆 But maybe they should hear how much is this waiting affecting us and how much our kids struggle and do deserve that extra support.
Thank you for wishing me to be before you on this queue 🫂 but we both equally need that decision back as soon as possible. 🤞🏻

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Ohhh my love! 😭 crying helped me! I didn't even intend to but I did! 😂😂
I honestly do pray you get a decision before me! Only because you've waited sooo long ❤️ xx

Persianpoppy · 09/05/2024 19:45

@Fee89 @Tracy37x @Matilde08 am I cheeky for saying I don't want to wait until Monday like the lovely lady said 👀🤣 I feel like ringing again tomorrow but I see no point seeing as she said DM would deffo take my babies claim today.. 😂😂 x

Kla1913 · 09/05/2024 19:50

JodiexXXXx · 09/05/2024 18:07

Oh we’ve been on the list for 3 years for an assessment now aswell

Aw 3 years is a long time. We had our daughters first appointment in March and her next is in June after a 2 year 3 month wait. It's a nightmare. You can apply for DLA without a diagnosis it just depends on how much care your child needs if it's more than an ordinary child with no additional needs, my daughter isn't diagnosed yet but she has been with an overactive bladder so recieves high rate care, my other daughter hasn't been diagnosed either she is on the CAHMS waiting list for ADHD but I'm currently waiting scan date 6/3, long wait

JodiexXXXx · 09/05/2024 19:57

Kla1913 · 09/05/2024 19:50

Aw 3 years is a long time. We had our daughters first appointment in March and her next is in June after a 2 year 3 month wait. It's a nightmare. You can apply for DLA without a diagnosis it just depends on how much care your child needs if it's more than an ordinary child with no additional needs, my daughter isn't diagnosed yet but she has been with an overactive bladder so recieves high rate care, my other daughter hasn't been diagnosed either she is on the CAHMS waiting list for ADHD but I'm currently waiting scan date 6/3, long wait

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Thank you for replying we have another doctors appointment on Wednesday to see the doctor so hopefully we can get a push on the referral and be referred to a dietitian aswell

Original poster

Tracy37x · 09/05/2024 20:02

Persianpoppy · 09/05/2024 19:45

@Fee89 @Tracy37x @Matilde08 am I cheeky for saying I don't want to wait until Monday like the lovely lady said 👀🤣 I feel like ringing again tomorrow but I see no point seeing as she said DM would deffo take my babies claim today.. 😂😂 x

Not cheeky at all! You’ve waited long enough and had more patience than I can even comprehend!
Call ther again tomorrow, maybe if you keep calling they’ll hurry their butts! The weekend will be torture for you!
Definitely worth a shot, some decisions get made within hours… yours could be one of those 🙏 xx

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Kla1913 · 09/05/2024 20:06

JodiexXXXx · 09/05/2024 19:57

Thank you for replying we have another doctors appointment on Wednesday to see the doctor so hopefully we can get a push on the referral and be referred to a dietitian aswell

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Hopefully they can help you and push it forward, you should apply and send what evidence you have, like I said if your child needs looking after more than a child without additional needs then I would apply if I was you, send referral letters, gp letters, anything school has in place and just be honest in the form about their day to day life.

JodiexXXXx · 09/05/2024 20:11

Kla1913 · 09/05/2024 20:06

Hopefully they can help you and push it forward, you should apply and send what evidence you have, like I said if your child needs looking after more than a child without additional needs then I would apply if I was you, send referral letters, gp letters, anything school has in place and just be honest in the form about their day to day life.

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Thanks I’ve started her food dairy so the doctor can do her weight and height for the referral and stuff so will ring up and ask for the forms for her xx

Loubyloufootball · 09/05/2024 20:12

Kla1913 · 09/05/2024 19:50

Aw 3 years is a long time. We had our daughters first appointment in March and her next is in June after a 2 year 3 month wait. It's a nightmare. You can apply for DLA without a diagnosis it just depends on how much care your child needs if it's more than an ordinary child with no additional needs, my daughter isn't diagnosed yet but she has been with an overactive bladder so recieves high rate care, my other daughter hasn't been diagnosed either she is on the CAHMS waiting list for ADHD but I'm currently waiting scan date 6/3, long wait

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Good god I hope my daughter isn’t on the waiting list for 3 years! God help us all! 🙈
How old is your child please?
my daughter is 14, only referred to CAMHS in December but accepted for ASD.
May have to look at private if it’s a 3 yr WL. I don’t see how she could go 3 years without knowing especially since it’s so important for career options.
This is my biggest thing right now. I don’t know how she would get a job or how she will cope with Post 16 options.
i feel like I don’t know what to do to help her

Kla1913 · 09/05/2024 20:18

Loubyloufootball · 09/05/2024 20:12

Good god I hope my daughter isn’t on the waiting list for 3 years! God help us all! 🙈
How old is your child please?
my daughter is 14, only referred to CAMHS in December but accepted for ASD.
May have to look at private if it’s a 3 yr WL. I don’t see how she could go 3 years without knowing especially since it’s so important for career options.
This is my biggest thing right now. I don’t know how she would get a job or how she will cope with Post 16 options.
i feel like I don’t know what to do to help her

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Aw ino it's all a nightmare isn't it, my eldest is 9 and in year 4 and was referred end of year one, she has suspected autism, asd. So it was social and communication pathway she was referred to, were as my youngest who is 6 and in year 1 has just been reffered in March for ADHD but was referred CAHMS which is apparently 18 month wait so they are both different things, it's all confusing to me lol 😆
Aw I know how you feel I have felt nothing but worry about my girls and what their future looks like but I take each day as it comes, hope you are OK x

Kla1913 · 09/05/2024 20:22

JodiexXXXx · 09/05/2024 20:11

Thanks I’ve started her food dairy so the doctor can do her weight and height for the referral and stuff so will ring up and ask for the forms for her xx

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Aw good, yeah a diary is good evidence to send, ask for a short summery of medical report from gp to send and of they attend school if they have anything in place, good luck x

Loubyloufootball · 09/05/2024 20:24

Kla1913 · 09/05/2024 20:18

Aw ino it's all a nightmare isn't it, my eldest is 9 and in year 4 and was referred end of year one, she has suspected autism, asd. So it was social and communication pathway she was referred to, were as my youngest who is 6 and in year 1 has just been reffered in March for ADHD but was referred CAHMS which is apparently 18 month wait so they are both different things, it's all confusing to me lol 😆
Aw I know how you feel I have felt nothing but worry about my girls and what their future looks like but I take each day as it comes, hope you are OK x

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Yes it’s so stressful. Thank you for your reply. I don’t know where to turn but hopefully things will be ok.
it’s just so late in the day, she’s Y9. I didn’t have a clue till someone mentioned it at school. We just got on with things

Kla1913 · 09/05/2024 20:33

Loubyloufootball · 09/05/2024 20:24

Yes it’s so stressful. Thank you for your reply. I don’t know where to turn but hopefully things will be ok.
it’s just so late in the day, she’s Y9. I didn’t have a clue till someone mentioned it at school. We just got on with things

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See I worry about high school life too 🥺 hopefully your daughter is getting the right support in school, my sister is currently going through it with my 14 year old neice, things will get better, I was the same I didn't have a clue either with my eldest I thought every child behaved like my daughter until I researched and new they wasn't, that's what made me switched on with my youngest, she is completely different though, really hard work, my eldest is quite, reserved, very sensitive, has a lot of meltdowns, its hardwork x

Mamagugu · 09/05/2024 20:35

My daughter is 11. Been back and forward with GP since she was 2 about her eating, height and weight as well as other “quirky issues”. Seen various dieticians and different paediatricians about it, told she’d grow of of it and think they thought I was an over anxious mum. She was diagnosed with AFRID last year (school and us kept food diary’s) Have a wonderful consultant who has said she definitely is autistic but waiting for the official diagnosis (3 years into the wait) and now at final stage should hopefully be confirmed before she starts secondary school in September. She also saw something and suggested genetic testing which confirm Turner’s syndrome at the age of 11! She needs growth hormones as well as hormones to help her go through puberty as she’s basically in the menopause already. She also has high blood pressure and a heart issue which none of this would have been picked up had I not pushed and pushed and pushed to say something was not right with her development x

Persianpoppy · 09/05/2024 20:38

Tracy37x · 09/05/2024 20:02

Not cheeky at all! You’ve waited long enough and had more patience than I can even comprehend!
Call ther again tomorrow, maybe if you keep calling they’ll hurry their butts! The weekend will be torture for you!
Definitely worth a shot, some decisions get made within hours… yours could be one of those 🙏 xx

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Just feel like it's abit rude of me 😂 just because she was so sympathetic when I cried down the phone she had the DM look at our claim today! She even said if we don't hear by 3pm on Monday to call the same way I did, give her name and she'll have it done that same day.
dont want to push my luck even more!
awwww you're so sweet ❤️❤️ xx

Loubyloufootball · 09/05/2024 20:42

Kla1913 · 09/05/2024 20:33

See I worry about high school life too 🥺 hopefully your daughter is getting the right support in school, my sister is currently going through it with my 14 year old neice, things will get better, I was the same I didn't have a clue either with my eldest I thought every child behaved like my daughter until I researched and new they wasn't, that's what made me switched on with my youngest, she is completely different though, really hard work, my eldest is quite, reserved, very sensitive, has a lot of meltdowns, its hardwork x

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She definitely is. School have been brilliant. It’s harder when they are older isn’t it.
It has definitely made me more aware. My younger son is now going through ADHD assessment. I am definitely more switched on now.
thanks for your reply x

SophieP88 · 09/05/2024 20:43

I don't suppose anyone else has experienced this. My Daughter whos 4 will not go to the toilet at school so she keeps getting water infections this is her 2nd one in the last month. Every day these last couple of weeks when I've picked her up from school she's either wee'd or poo'd herself on the way home. I just don't know what I'm supposed to do I've tried talking to the health visitor about it as she's still in nappys on a night but constantly goes through. Apparently they can't refer her for help until she's 5. She's 5 in August so not much longer to wait for that, I guess I was just wondering if anyone had been in the same situation before.
Also I am currently waiting a decision for a Mr as she's autistic would it be worth phoning and mentioning or just leaving?
Sorry for the long post I'm just at a loss x

Loubyloufootball · 09/05/2024 20:50

Mamagugu · 09/05/2024 20:35

My daughter is 11. Been back and forward with GP since she was 2 about her eating, height and weight as well as other “quirky issues”. Seen various dieticians and different paediatricians about it, told she’d grow of of it and think they thought I was an over anxious mum. She was diagnosed with AFRID last year (school and us kept food diary’s) Have a wonderful consultant who has said she definitely is autistic but waiting for the official diagnosis (3 years into the wait) and now at final stage should hopefully be confirmed before she starts secondary school in September. She also saw something and suggested genetic testing which confirm Turner’s syndrome at the age of 11! She needs growth hormones as well as hormones to help her go through puberty as she’s basically in the menopause already. She also has high blood pressure and a heart issue which none of this would have been picked up had I not pushed and pushed and pushed to say something was not right with her development x

Good on you for pushing! Hope you are ok x

Myadaggon · 09/05/2024 20:50

@Summerrp she is 3. It is disheartening but il send more evidence in. The gentlemen I spoke to today was so nice, I just knew it was a decline. I just hope all the evidence I send In they will actually read lol.

Original poster

Tracy37x · 09/05/2024 20:57

Persianpoppy · 09/05/2024 20:38

Just feel like it's abit rude of me 😂 just because she was so sympathetic when I cried down the phone she had the DM look at our claim today! She even said if we don't hear by 3pm on Monday to call the same way I did, give her name and she'll have it done that same day.
dont want to push my luck even more!
awwww you're so sweet ❤️❤️ xx

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Ah yeah, I see your point…, hold off til Monday, at least then if you haven’t had a decision then you can reiterate what was said to you today and push them.
You may even get a text tomorrow being awarded 🤞 the end is in sight hun xx

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Kla1913 · 09/05/2024 20:58

SophieP88 · 09/05/2024 20:43

I don't suppose anyone else has experienced this. My Daughter whos 4 will not go to the toilet at school so she keeps getting water infections this is her 2nd one in the last month. Every day these last couple of weeks when I've picked her up from school she's either wee'd or poo'd herself on the way home. I just don't know what I'm supposed to do I've tried talking to the health visitor about it as she's still in nappys on a night but constantly goes through. Apparently they can't refer her for help until she's 5. She's 5 in August so not much longer to wait for that, I guess I was just wondering if anyone had been in the same situation before.
Also I am currently waiting a decision for a Mr as she's autistic would it be worth phoning and mentioning or just leaving?
Sorry for the long post I'm just at a loss x

Hi yes my daughter, she is 9, been diagnosed with an overactive bladder, has had godnoes how many UTI infections, she recieves HRC from DLA for this, she is under the continence team and is on medication, she is terrified of toilets always has been from a young age, she is currently going through autism assesment, try get a referral to your continence team, they have been a massive help for me and my daughter x

Fee89 · 09/05/2024 22:32

@Persianpoppy I dont even know why you ask my advice 😂 you 100% know what im going to say. Id be calling tomorrow after lunch asking for update and to confirm it was marked as priority 😂 xx

MrsRawl · 09/05/2024 23:31

Kla1913 · 09/05/2024 20:58

Hi yes my daughter, she is 9, been diagnosed with an overactive bladder, has had godnoes how many UTI infections, she recieves HRC from DLA for this, she is under the continence team and is on medication, she is terrified of toilets always has been from a young age, she is currently going through autism assesment, try get a referral to your continence team, they have been a massive help for me and my daughter x

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My 5 year old is the same and he’s gotten worse in year 1 at school because they have to go through the year 2 classroom which he won’t do, so he holds all day, then he ends up having to go down a passage on the way home.
He’s diagnosed with Selective Mutism, anxiety and is awaiting autism assessment.
Does school have a school nurse? I requested to see her regarding it and she made an appointment and came to my house, she was lovely, we had to do input and output urine charts, stool charts etc. She’s also contacted my son’s teachers and said that someone who he is confident with needs to escort him to the toilet when every one else is in class so he can go, he’s also got a toilet pass should he need to go all he has to do is put a thumbs up ( he’s still not done this yet though ) He’s 6 in August and still in nappies at night and has only just come out of nappies for poos.
Our school nurse said she would normally refer him to the continence team, however due to nhs funding ( or something or other ) she said at the moment they was only taking on urgent cases in our area and we’d have to wait.
but definitely worth speaking to school nurse, she gave me loads of advice,
I also contacted health visitors when he was in reception about this and was told no sorry just speak to school but I assumed hv dealt with them until they was 5 x

MrsRawl · 09/05/2024 23:32

MrsRawl · 09/05/2024 23:31

My 5 year old is the same and he’s gotten worse in year 1 at school because they have to go through the year 2 classroom which he won’t do, so he holds all day, then he ends up having to go down a passage on the way home.
He’s diagnosed with Selective Mutism, anxiety and is awaiting autism assessment.
Does school have a school nurse? I requested to see her regarding it and she made an appointment and came to my house, she was lovely, we had to do input and output urine charts, stool charts etc. She’s also contacted my son’s teachers and said that someone who he is confident with needs to escort him to the toilet when every one else is in class so he can go, he’s also got a toilet pass should he need to go all he has to do is put a thumbs up ( he’s still not done this yet though ) He’s 6 in August and still in nappies at night and has only just come out of nappies for poos.
Our school nurse said she would normally refer him to the continence team, however due to nhs funding ( or something or other ) she said at the moment they was only taking on urgent cases in our area and we’d have to wait.
but definitely worth speaking to school nurse, she gave me loads of advice,
I also contacted health visitors when he was in reception about this and was told no sorry just speak to school but I assumed hv dealt with them until they was 5 x

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@SophieP88 sorry quoted wrong person on my above comment but see it above x

Persianpoppy · 10/05/2024 06:11

Good morning my loves! ❤️
fingers crossed for all those awaiting awards! 🤞🏼
@Tracy37x im so impatient 🤭😂
@Matilde08 i hope you get some good news today! You and your child deserve it the most! ❤️

Original poster

Tracy37x · 10/05/2024 07:22

Persianpoppy · 10/05/2024 06:11

Good morning my loves! ❤️
fingers crossed for all those awaiting awards! 🤞🏼
@Tracy37x im so impatient 🤭😂
@Matilde08 i hope you get some good news today! You and your child deserve it the most! ❤️

good morning! Oh I’m impatient too. I’d be even more so if I knew they were looking at my son’s claim!

fingers crossed for lots of awards today! 🤞 I have a good feeling for today for you @Persianpoppy xx

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