Dla wait time part 2 2022

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Set new one up as old thread ended @April202 @Nicky80catri @Leaf1216 can't remember any other names

Scan date 25th March just called them and my daughter was awarded on the 1st June high rate care and low rate mobility so relieved!! Backpay due this week and should receive the letter shortly too. Hope you all hear good news soon :)

@Td109 can i ask what you applied for? My daughter received the same award as yours and I’m just trying to weigh up whether I should appeal for the higher rate mobility.

No problem at all, my 7 year old daughter has neurological problems with an immune system dysfunction and ME/CFS symptoms. She’s been unable to attend school since December apart from the odd morning but she needs continuous 1:1 whilst there. She also has severe head banging tics, absence’s, sensory issues and intrusive thoughts. These were sudden changes with her being just your typical child before a streptococcus infection caused brain inflammation leading to all the above issues and more. She also uses a wheelchair but is able to walk a little, if she was confined to a wheelchair then I would MR for HRM.

My daughter also uses a wheelchair but can walk a little with a limp. I think they qualify if walking causes pain or exhaustion so it’s worth appealing if this is the case with your daughter.
My daughters 9 but is quite petite which is why she doesn’t need a wheelchair all the time, because I’m still able to carry her upstairs, and if she’s tired etc.

Hi,
Been following this for a few days. Scan date was 11th April. Had a letter to say and received my form and I could contact them from today (6th June) if no update.

Wasnt particularly helpful on the phone, didn’t even say it was with anyone just that they had everything and currently saying up to 12 weeks for a decision.

Just thought would update with my experience and what was said to me.

Eldest has always had difficulties but didn’t know we could even try to claim. Confirmed autism this year, has an EHACP and currently about 3 school years behind.

@Td109 thought I might add some hope for you. My cousin developed these symptoms when she was 9 after glandular fever. She was bedridden for a few years and home schooled. But she managed to recover and was back at school when she was 13. Even did horse riding for a few years. She’s 37 now and is very strict with her health but hasn’t redeveloped any ME/cfc symptoms.
so if you ever feel this is ‘it’ for your daughter remember there is always light at the end of the tunnel with these conditions.
my heart goes out to you though x

@Td109 your daughter sounds so similar to my daughter. She was so healthy had never even had antibiotics (she's 12 tomorrow) until she caught covid in September. It caused a neurological reaction/brain inflammation. She was in hospital a long time and in intensive care in an induced coma. She had two weeks in year 7 before getting sick. She didn't eat for four months, and didn't walk for seven months. She can manage a few steps but that is it. She also has mental health issues stemming from this and won't be able to return to mainstream, she also has ME and sleeps 17/18 hours every night. You are the first person I have come across whose child has had similar!

@Td109 how much walking can your daughter do? I'm really hoping for the hrm. My daughter uses her wheelchair full time. Can manage about 10 steps with her aid but her bed has been downstairs since she came home from hospital in December because she can't manage stairs.

DC don’t need to be in a wheelchair/SN buggy full time to get HRM. It is possible to get HRM under the virtually unable to walk criteria, which looks at the distance, speed, time and manner of walking. There is more information here.

Oh my goodness, your poor daughter! So sorry to hear that, have you looked into PANS/PANDAS (paediatric autoimmune Neuropsychiatric syndrome) there’s a UK charity Facebook group called PANS/PANDAS UK SUPPORT GROUP. There’s lots like our girls going through these horrible symptoms and lots of useful advice on there. We have a diagnosis of PANDAS and are just about to start a long term antibiotic treatment plan. The NHS let us down hugely and do not treat this condition so have had to go private to a PANDAS specialist! Really hoping things improve for our daughters!

Thank you, I will take a look.

We always thought it was PANDAS. This money will help get her seen privately. I have an ongoing claim for negligence with the NHS she was treated appallingly. It's why she has severe ptsd. Camhs have even said that if she sees any hcp right now she is at risk of slipping into a coma like sleep. Nobody took it seriously until it was almost too late. She in the end was ventilated and sent to intensive care in England to be seen by a neurology specialist.

@Legofigure that is so useful thank you! I had an incorrect perception on what HRM could be awarded for.

@Sodie honestly it’s been so traumatic which I know you can relate to sadly! I’ve even had doctors try and tell me she’s anxious and doing this to herself!! Her vision has been badly affected too so awaiting an ‘urgent’ referral to the eye hospital! Been in A & E 5 times with my daughter in crisis and struggling to breathe/swallow etc and because of the nhs guidelines they just patch her up and off we go as there’s nothing much they can do to sort the underlying issue of PANDAS. So your daughter even went to intensive care too which is terrible they let her get to that stage! I would definitely ask them to look at the mobility award again and hope you get the HRM. Good luck with getting your daughter the treatment she needs too.

@Sarah3587 Success stories of overcoming these types of illnesses are very welcome and that does give me hope so thank you 😊

She had been in hospital for 6 weeks almost by tgat point. Since the end of September, having ng feeds, MRI, lumbar puncture etc. They kept saying it was a mental health crisis, wanted her sectioned. She couldn't eat, stopped walking. It wasn't until the 13th of November that things took a turn and she was sent to Bristol picu. Then she was transferred to noahs ark where she spent weeks. She woke up two weeks before christmas.
Have you got an ot? Ours has been fantastic. We haven't had a decision yet. I'm going to phone back Friday.

I called again today. My scan date is 22nd March, I thought it was 23rd but it’s not. It’s still with the DM. The lady on the phone was nice enough but no real idea how long it will take. I didn’t have any letters but I had the Senco and FSW input on the form and lots of info about my little ones struggles. It’s been 12 weeks and I’m worried now. Guess I’ll just have to keep waiting. It’s so frustrating isn’t it?

Sorry to jump on this thread, was doing some research in DLA waiting times. It's been 8 weeks since my sons was scanned, I'm so nervous and my anxiety is through the roof. I suffer with anxiety disorder so this waiting isn't helping at all (from what I have read you are all in same situation). I struggle talking on phone so too scared ring up for an update.

I did my daughters renewal about 5 months ago and I got her decision about 2/3 days before the end of the 8 weeks. So I was hoping his would be same time frame, now I'm concerned they will refuse him.

This is the first time applying for my son almost 11 years old, he has autism and needs constant supervision, the school is over the road and he can spend hours (no joke about 2-3 hours) standing at the railings over the road from our house screaming mum over and over. Iv put all this down in the form, and how he needs supervision with everything, even eating as he puts that much in his mouth I'm petrified he will choke. He has no awareness of danger, he can't cross a road and he can run when a sound or smell upsets him due to sensory overload, to point I rarely take him out now.

Was I right to put all this down on the form? I know I sound daft asking this as my daughter is on DLA but she has a mobility problem shes 8 years been on dla since 19months (despite doesn't recieve mobility side 🤦‍♀️), iv never had to do a form for neurological needs. My sons school senco has written on the form as someone who knows him, she did state he has full 1 to 1 support to help with his anxieties and sensory needs. He's also waiting on an ehcp not sure if that makes a difference.

So sorry for this long message, I'm so confused and worried they will refuse him and worried me putting everything on form they will think I'm exaggerating.

If you got this far thank you so much for reading.

@sulli19 Hi! Welcome to the thread, you was absolutely right to put it all down on the forms. Anything you can say about his needs will help.

Looking at this thread the wait time for new claims is going up to around 10 to 12 weeks so I wouldn't worry (easier said than done, I know) too much about that as it's been 8 weeks so far for you.

I first claimed for my son when he was 6 and I had no diagnosis or ehcp, I just used his referral letters, put all his needs down in the forms and he was awarded. I too felt like they would think I was exaggerating.

We are just waiting on his renewal now and got a diagnosis when the forms came through so I have been able to add that. Renewals are different as they are done in time for the renewal date rather than the 8 weeks they give us on the letter. I have been waiting 9 weeks now but I know of some who sent theirs closer to the renewal date and got a decision back within 3 to 4 weeks.

Hang tight, it's really is a horrible wait.

@Bizzlemizzle thank you responding, and thank you. I have been thinking of joining this forum for a while. It's nice to know I'm not alone and that others are in similar situations.

Thank you, I'm worried they will be sat judging me in the office because I get it for 1 child and then now they will think why have I only just applied for my son. I know I'm paranoid.

Hopefully it won't be much longer then, this wait is awful.

Hope you hear back soon 🙏 xxx

Hi all, I'm waiting on a coc from 7th Feb, my claim runs out 6th July and have been told to get the renewal in (previously was told the coc would act as a renewal)
Did most of you go onto a separate sheet for alot of the care questions? Luckily alot of the answers are still the same from the coc form I did but I find myself trying to condense the answers - don't want that to be detrimental to his case! I was thining to attach the answers I sent in for the coc as well or is that over kill?
The whole thing is driving me nuts now 😭

I’m currently on hold to get an update. Scan date 28th March x

I called today and there currently working on the 7th feb . As it’s a coc I am waiting on also .

This is good thanks for this @Mumabear239 I'm waiting on a C.O.C from the end of feb

my scan date is 7th April so I have a long wait .

@Kelsmaizey Did you manage to get through and get a decision?