7 year old tube fed child DLA renewal refused :(

dark_lady

Bumpmakesfour wrote: »

40 mins going through the reconsideration process...detailing our day in minute detail..now to wait approx 8 to 11 weeks.Just sat here in tears because it's all so unecessary:( Everything I just told him was on her claim form but the reasons the decision maker gave were that all night care was done before bed time.Apparently I change her nappy check her tube and go to sleep..so me writing about pump alarms, retching, soaked beds etc?? What a flipping joke :mad::mad::mad::mad: So now we have to sit and wait..again..
I asked him at the end what the criteria was,their OWN criteria,for higher rate care...and he said attention for periods over the day and night..I asked him how I hadn't clearly demonstrated that already..he couldn't answer:mad: Totally and utterly hacked off!!!

Bumpmakes four if i were you i would seriously consider taking this to a national newspaper or a womens magazine. Because this sort of treatment is absolutely disgusting.
As for the nasty sickening comments on here,they simply prove that i have made the right decision.
Over the BH weekend i joined another forum and have started posting on there so will not be posting on here as often and i certainly wont be starting threads on this site anymore.
I too am a carer. In my case it is my husband who is disabled and i wanted to discuss personal issues about it but decided not to do it on MSE for glaringly obvious reasons. Having said that there have been some lovely comments from some very supportive people on this thread too. If i do start any thread on MSE it will be consumer related. I would not post anything personal on here.
Bumpmakesfour if you do decide to involve the media the Guardian are very interested in stories involving benefit cuts and i suspect thats what they are doing. Cutting your daughters benefits in a very sly heartless way.
Good luck with your fight. Dont give up and i wish you and your lovely family all the best xxx

SuziQ

dark lady- the problem is, if we all stop posting because of the heartless bullies on here-they win! I understand what you are saying though.

Bumpmakesfour

Kingfisherblue..huge huge hugs to you and your son xxx

Thanks SuziQ and Darklady x The man I spoke to on the phone was really nice bless him..he took notes the entire 40 mins.I asked him to specifically note and pass on that I was very very distressed and wanted to complain about the original decision makers obvious lack of reading skills.I said at the end that I would wait for the reconsideration result but assured him that if the correct award was not given I'd be appealing and bringing in my MP,welfare rights and every medical professional involved in her care.I guess the press is another resort if they don't sort it.It's just very poor timing.Say the result does come in 11 weeks..I'll be 34 weeks pregnant,and in the meantime have my sons renewal to do :eek: Lord only knows how I'll cope if I have to appeal that one too!!:(
I stopped the anti depressants I've been on since my daughters birth as soon as we decided to try for this bump and up till recently I've been fine but the past 3 days I've felt mind numbingly low,down,tired and tearful.I honestly never thought this would affect me so much but I guess preggy hormones are adding to it all...<SIGH> having a feeling sorry for myself moment lol:p Everyones support is really helping me to be determined to fight this...that morning phonecall just knocked me a bit really xxxx
Darklady don't let the bullies win hun.It took ever ounce of my self restraint not to react further to the disgusting comments being posted on here if I'm honest.
The ONE positive thing the idiot poster made me realise is..that HIS personality is FAR more of a disability than any of our kids issues will ever be!:p x

kingfisherblue

Bumpmakesfour wrote: »

The ONE positive thing the idiot poster made me realise is..that HIS personality is FAR more of a disability than any of our kids issues will ever be!:p x

How true! And I'm so glad that his dreadful, bigoted comments have been removed.

Sending you hugs xx

Bumpmakesfour

Thanks x Spent the past hour ringing round trying to get her nurse/dietician etc to help by writing some reports.I HATE hate hate having to bother them because I know they are all really busy but the knock on effect of having the award reduced is huge.Poor hubby is really worrying himself silly and I feel so down so really need to get this sorted otherwise I wouldn't hassle them

mazmack

Our paediatrician told us that people are getting turned down a lot at the moment but succeed on appeal quite easily, so don't panic yet...waiting to hear about our renewal here too.

Bumpmakesfour

The nurses and doc I spoke to today said the same..that they were getting a lot of parents at the moment whose kids with highly complex needs were getting refused.Tbh though it's not like I have a "choice" but to appeal...It's the difference between me being able to stay at home to care for the kids or not really:o
Good luck with your renewal Mazmack x Northerntrish have you been refused too then?

FleurDuLys

Thinking of you Bumpmakesfour. I can't really add anything except my support and best wishes to you xx

Bumpmakesfour

Tx FleurDuLys xx
Northerntrish..sounds similar to us.Sent stacks and stacks of medical evidence,backed up care needs on claim form..but was refused.It stinks it really does!Sorry you feel you can't take your fight any further x

Bumpmakesfour

Can anyone help please?At the end of my tether and the tears won't stop.I just spoke to carers allowance customer service and the man on there was so mean and horrible to me I just couldn't understand what he was telling me.Statred crying so had to get off the phone
As my daughters DLA is under reconsideration her carers will stop right?Her award ends on 30 sept(her bday~nice present thanks DWP) but as I have a second child on HRC I asked how I move the carers payments over to him.I need to know how we can do it so we lose as little money as possible.We'll already be hundreds down from her award reduction,we have to now pay each month to extend the car lease from motability whilst they sort it and it is stressing me out to the point of feeling absolutely depressed thinking about it all now.Once her HRC has ended I'm guessing we'll lose tax credits too as I'll have to inform them.So we're faced with christmas,bday new baby,having to pay for a car whilst losing lots of cash..all absolutely unforeseen and as a result we have no buffer.I'm droning on..so upset.
I was trying to ask him what dates I put on the new claim..to try to speed it up.As in if DDs award ends on 30/9 do I put new claim from 1/10/? but he was horrible and just kept repeating himself with a point I clearly didn't understand.So does anyone know what to do? The thought of losing carers on top of everything else would top it all off..all this because the DM at DWP couldn't read.:mad::mad::mad::mad::mad: