7 year old tube fed child DLA renewal refused :(

Bumpmakesfour

My 7 r old daughter is overnight gastrostomy fed,doubly incontinent,has chronic lung disease/severe asthma,has unsafe swallow etc and has had the high rate DLA award since she was 3 months old then the high rate mobility since 5 and we have a motability car.Her award was up for renewal and I sent it off in may with a huge stack of supporting documents,they requested a report from school who support our claim. I chased them two weeks ago as the car contract is ending and we just needed to know where things were at and the guy on the phone said he expected things to be done and dusted soon and not to worry.
Anway we arrive back from a few days at the seaside yesterday to a DLA letter saying she gets the lower rate care now as she only needs one hour care per day and no mobility at all.. I am gobsmacked.Her many meds a day,tube feeds,chest physio,multiple hospital appointments,gastrostomy care etc etc etc come to more than an hour before it's even school run time! And with her overnight feeds/soaked beds/nebulisers/night terrors etc through the night..how can she not have an extra night time needs?I was up 5 times last night,8 the night before :(At the sea when other kids were playing she was in her buggy tired,on a feed pump or crying coming off the dancefloor needing her inhaler with cramped legs I put all this on her form,can't they read??
Typical that it arrives too late on a fri to call..it's bank holiday.I'm 6 months pregnant,can't sleep or stop crying.This decision will mean no car,loss of hundreds of pounds,carers allowance and extra tax credits that mean I am able to stay home to look after my daughters health needs.We've had it renewed with no problems each time so far and I am so upset that someone somewhere has blatantly not read the forms or supporting evidence of what is a full time job looking after my child and put it down to an hour a day (( Any advice please?

Lady_gaga

appeal....

Bumpmakesfour

Thankyou..I just read so many people saying that even on appeal they are turned down or they take many many months.The main reason my daughter was born 3 months + early was stress with various things going on at the time..so didn't want to be stupidly stressed out this time but got no choice I guess.I've read and re read the criteria for higher rate..over night care.SURELY overnight tube feeds alone count??

SuziQ

I'm so sorry. Take a deep breath and try to calm down as your baby doesn't need your stress!
Did you ensure that your answers on the form indicated the actual care she needed,over that of a child the same age, with actual times indicated? Did they contact her specialist or GP, if it was the GP, was he/she aware of the time involved in her care? I know you can appeal and I am sure someone more knowledgeable will be along to advise. I am amazed because your child clearly requires more care than my own, who is Autistic, and yet his award of hrc/lrm was renewed in May (much of the care with him involves night time, as does yours)and they didn't even bother contacting our specialist or GP, which clearly shows the discrepancies in this whole process.
It would be worth getting a welfare rights person or specialist nurse to look over the info you submitted to see if it was the way the answers were worded that has led to the downgrade. Did you keep a copy?

Bumpmakesfour

Thankyou SuziQ x
TOTALLY agree it is flawed..my son has aspergers/ADHD/dyspraxia/sleep disorder etc..on meds etc and very hard work but in a totally different way to my daughter.I sent in one pead letter and a prescription letter for my son and he was given HRC/LRM within FOUR days of them recieving his form.No reports requeted from school or anything .
With my daughters I sent letters from Addenbrookes,Great ormond st,chest physio,asthma nurse..they have letters from dietician,comm nurse,milk feeds and plastics delivery letters,comm paed,critical care paed..umm school.Plus I filled the form out with soo much detail.I just do not get it HOW can they squish all the meds/feeds/washing after soiling/acapellas/nebs etc into ONE hours care a day when her pump runs for two hours a day then 8/9 overnight alone??Stupidly didn't keep a copy..honestly thought it'd just be renewed like the past 3 times as her care needs have increased if anthing not decreased.Put times/frequecy etc and really filled the boxes.Lost and upset

wannabedebtfree_2

The people in these offices that read the forms don't know the full story, you are a faceless name on a piece of paper and your daughter means nothing to them. It makes the decision much easier for them that way!!

You should definately appeal, make sure it is known that you won't let it lie. Like the others said though, don't stress too much (easier said than done) as it's not good for bump.

There is nothing you can do until Tuesday, so try and enjoy the weekend with your family and forget about the ridiculous decision they've made based on a form. Did she have to go for a medical for this? Can you get to see all of the Dr's notes?

Good luck with it all and take care xx

swimsink

Agree with all above, appeal! Your daughter needs full care and if you are losing out on 'income' and have to work your daughter is obviously going to suffer. Just don't back down! Good luck xx

Bumpmakesfour

tx Wannabedebtfree and swimsink x
No medical nope..she's under three hospitals and 11 other health care professionals at last count and the guy on the phone actually said he didn't see what the delay was..and told me not to worry and he was sure we'd be ordering a new car soon..talk about being lulled into a false sense of security!:( I'm just so confused..they state their guidelines very clearly about higher rate..and my daughter very clearly fits the HRC.I can see why they were maybe undecided between HRM and LRM as she can walk but tires very very easily but none?? Really appreciate the replies thankyou..hubby is panicking,I'm panicking..yuck

SuziQ

They may not have counted the pump, unless you clearly stated that the pump/your daughter has to be supervised/observed non stop during that time. The people making these decisions don't, I think, have any medical knowledge so may think you just set the pump up, let it run and go back to sleep, having no experience of them. My background is nursing, so I am fully aware of the sort of workload you have with your daughter, and think you are very brave to be having another baby as well-you are superwoman! I don't know whether it's worth asking them for a copy of your form if they still have it. It will be difficult to build an appeal without it I think. I hope you can start the ball rolling for an appeal in Tuesday, and maybe you do need to get some advice and support, either from the CAB or is there a support group for your daughter's condition with experienced people to advise you?

Bumpmakesfour

tx SuziQ..I put on there that we have to attend to pump alarms,untangle her when the tubing gets wrapped round her neck/legs etc.She had a fundoplication operation a couple of years ago so is unable to burp or vomit.She also retches terribly when her feed tolerance levels are reached meaning we have to check on her very very regularly throughout the night to check she's not choking..then if she is we have to vent the tube with an open 50ml syringe.When she catches regular tummy bugs she can't vomit like other kids..we have to drain it ourselves and don't leave her side.She can't drink regular drinks or she aspirates..needs monitoring as she tries to sneak tap water etc in the night.She has night terrors and sleepwalks..not great when you're plugged into a pump/the wall by a balloon held feed button that can rip out.She soaks beds due ton over night feeds/soils.She needs night time ventolin nebulisers..constant repositioning.I put ALLLL this down ..just do not get it

Muttleythefrog

DLA is so hit and miss... and there seems to be a pattern lately on this board of 'unchanged' claims suddenly being lowered in award. Ask for statement of reasons for their decision and copy of all the evidence they used. With little to lose it sounds like appealing is the logical option. Might be worth you getting CAB/welfare rights or similar to help... you might need it and they may be able to help regarding getting supporting evidence to help in appeal.

Good luck!