Mark spoke to the DLA office this morning to discover why they had made the decision that they did.
The reason is that they feel Grace no longer needs the overnight care, as she is no different to a normal child in that respect. Mark then mentioned about the mal-absorption and the need to go to the toilet with absolute urgency and their reply was "take her to the toilet before she goes to bed"
So a normal child would have to get up between 2 and 5 times a night would they if their creon didn't pan out in the day in the way that they would have liked? and ofcourse any normal child would wake up screaming 'I don't want to die' on a regular basis, or ask you to sleep with them and distract them so that they are not alone with their thoughts, and a normal child would obviously have their night sleep interrupted everynight in the early hours so that they could have their IV's administered 3 weeks out of every 3 months or wake up with wild nightmares because of the extreme medication they were on??
Of course I can see the similarities now, how silly am I?
I don't care about the benefit being dropped, but I got sick of pushing for the disabled badge and gave up, but its made me think why should we settle for second best? We got turned down for mobility because Mark put that Grace could probably walk 150 yards but it would most likely have a detrimental effect and she would be off school the following day because she just couldn't do it, not even 10 yards.
I now feel like my heart is in my shoes and dragging on the floor and just can't stop crying when I think that I will have to stand before a tribunal (if we get that far) and beg them to let us have a disabled badge and prove to them that she is in need of the benefit to a stupid pen pusher who knows nothing about my beautiful girls illness and never will other than looking for 'key' words on a DLA or mobility form.................do you know what? I don't think I can even be bothered to appeal, we have a choice of it being viewed again, or asking for an independant body to review it, and they are only going to come to the same conclusion by reading the same form, so what is the point.
And as for "Why don't you take your child to the toilet before they go to bed?" I've never felt so humiliated in my life, why do I have to explain this to people who don't know, why aren't there qualified people in this position?
About Me
- Gilly
- I am a parent of a child with Cystic Fibrosis. I don't go to work anymore. I was an administrator for many years but now feel I want to spend my time caring for my daughter. I have raised money for the cystic fibrosis trust through lots of channels from baking cakes to running the Hydro Active Challenge, and will continue to raise money and awareness as long as I can.
4 comments:
I'm sorry but this is disgusting treatment! I'd be more than happy to write you a press release Gilly and get this out in the media if you wanted it. I think attention needs to be drawn to such dreadful and humiliating treatment, I can scarcely believe what I'm reading! I wish I could give you a big hug hunni, you just don't need this at all. Thinking of you and let me know if I can help xxxx
Gilly lovely please please get some help on this.....the hospital must have a social worker or the CF Trust should be able to support you? It's draining you and it really shouldn't.
The system is mental; when I finished Uni I applied to go on Incapacity benefit as funnily enough, waiting for transplant and being on O2 24/7 I couldn't work. I got told I couldn't start it till the next year, which if the docs were right I wouldn't be alive in.
It defies belief it really does but please don't give up. I got it in the end, you will get there too. Just get some help, don't fight them on your own (I'm good at stinking phonecalls ;)). xxx
Thank you for your comments both, we are faced with the decision of disputing it and have another decision maker look at the forms or we can make a formal appeal in writing, thats our dilema currently so we are unsure which one to go for, so any guidance in that direction would me much appreciated.
You are right it is absolutely draining and thing I find most tough is that fact that it is 'my little girl' so I can't remain independant of emotions and get very upset and can't finish a conversation or stinking phonecall without crying (very annoying when you are trying to make a very important point!)
Much love to both of you, you are stars xxxxxx
I found that getting a CF nurse to help me and my mum fill in the forms was the best option for me. There was a lot of things that we didn't know we should put in the forms and a lot of things that I really struggled to put in the forms, as a teenager I didnt want a random person I didn't know to know intimate stuff like everytime I coughed too hard I would urinate myself and stuff along those lines!
Also I was told to put down a bad day, yes some days I'm not too bad but some days just getting out of bed to do my meds leaves me exhasted!
It's pretty s*** though that with everything we have to give every gruesome detail of our lifes to some stranger when I know teenagers who pop out kids and get loads of benefits no questions asked! RANT OVER! Lol!
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