7 year old tube fed child DLA renewal refused :(

doggle_2

Hey I'm so sorry to hear of your problems. It doesnt sound right at all, but with what many have been saying, they are making it a lot more difficult to get money out of the government now.
You have to do what you have to do and are capable of doing.
This appeal thing puts the fear of god into me, so I would imagine the same for you.

I have heard that appeals can take over a year. One of the reasons why I couldn't even consider going down that roiad.

Its a shame but those shikesters that have been conning money for years has now made it almost impossible for the genuine to get anything.
I should know, I dont fit into ESA or JSA so I have to cheat the system by claiming I am fit for work just to get £67 a week to live on.

kingfisherblue

My friend had a similar experience to yours - her son is also gastrostomy fed and has numerous other care needs. He can also walk, but has a lot of pain when he does so. His HRC/HRM was reduced to zero after the school sent in a report stating that he doesn't have any needs above that of an ordinary child - despite the school requesting (and receiving) additional hours for his 1:1 support worker the previous week, from 20 hours to full time hours. He also has tube flushes and medication in school, as well as having to be changed because of his continence problems. in addition, his autism and tourette's cause behavioural problems.

She appealed and was awarded HRC/HRM with it backdated, but it took nine months.

I can only reiterate what others have said - appeal. I would definitely ring on Tuesday and ask to speak to somebody about the award. Ask them to explain the decision to you. When they say something along the lines of 'less than an hour a day care', you can point out that, as stated on your form, your daughter has over an hour care before school, plus care during school, plus care after school, during the evening, and overnight. She is unable to tube feed herself, untangle the tubes when they tangle overnight, etc, and this takes X time. You might get a reconsideration, which is quicker, but if you go to appeal you get a reconsideration anyway.

My son has many of the problems that your daughter has, altohugh he is not tube fed. He has other problems as well, though, and like your daughter, has always had HRC/HRM, which I believe is the correct level for him. His fundoplication has come undone and can't be repeated (too dangerous, as he has had extensive abdominal surgery), and this adds its own problems. I fully understand why you would expect a straightforward renewal.

I wish you luck. If I can help in any way, please let me know.

Take care,

KFB x

wombles_forever

Hi, i know that this is stressing you out but if your son is receiving HRC/LRM then you should still be able to receive carer's allowance whilst you appeal the decision for your daughter.

Bumpmakesfour

Thankyou KFB...your support is much appreciated.Sorry to hear your friend had to go through an appeal to get hers sorted My daughters school report supported my claim...so they agreed she needs extra day care.It's the night time I guess they don't agree with.
Wombles forever..want to hear something funny?Guess what arrived in a lovely big brown envelope 15 minutes ago?Yes..that's right!My sons DLA renewal forms as his award runs out in january...haaa don't know whether to laugh or cry some more but all I can think is if my daughters very clearly complex needs got a knock back so will my sons.Fab timing huh? _pale_

wombles_forever

Ah, not good. In that case I don't know what to advise apart from appeal but I know that it can take a long time.

Best of luck and hang in there. Perhaps they will do a reconsideration for your daughter which, as far as I know, does not take as long as the full appeal process.

doggle_2

It really does make you feel like giving in and giving up doesn't it?

Bumpmakesfour

It really really does Doggle Filling out the stupid forms are heart breaking enough,watching my daughter struggle and having to do things that hurt her or upset her for "her own good" every day is hard but then having some jobsworth at an agency dismiss all her troubles and try to tell us she only needs one damn hour a day extra care makes me want to scream.I don't feel strong enough to do this.Had a very big scare with bump at 17 weeks and nearly lost him.Sat here thinking that if I go down a stressy appeal route and anything happens I'll blame myself.It is bloomin ridiculous!!I know people out there out playing golf and running after driving to the course/track in their mobtability cars.I know people who only appear not to be able to walk when it's to gain sympathy from a situation or it's near renewal time but on every other damn day they're skipping about with their kids happy as Larry giving a 25kg child piggy backs whilst wearing 4 inch wedge heels,doing sponsored walks and race for life...but when anyone questions their illness out comes the (charity subsidised)scooter,the sticks and their "feel sorry for me" face. GAHHHH... and breathe!!! Really really sorry the system is going against you too Doggle x

SuziQ

Bumpmakesfour-don't worry about your son's renewal yet! Telephone on Tuesday and check whether your carer's status can be transferred onto his claim, or whether your carers will be continued whilst you appeal. I know it all seems impossible right now, but things will sort themselves out-just take one problem at a time and refuse to become overwhelmed-heaven knows, the burden you have caring for your children PROVES you are immensely strong so don't be cowed by this!

Bumpmakesfour

Very sensible advice ..thanks x Was just panicking a bit as baby is due in december so thought it'd be best to try to get his done because I can't imagine appealing a second one with a newborn in the house :eek:
Will call carers on tues too,tx Secretly hoping I'll ring DWP and they'll say.."oh yes..ooops our error" but know I'm living in fantasy land

Bumpmakesfour

Planning ahead..Have started keeping a diary of each meltdown/hiding under tables/smashing bedroom incident for sons claim form just to try to avoid another knock back