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Hey all, this is a bit of a long shot but I thought i'd give it a try and see if anyone could help me....
My little sister is 18 and was diagnosed with Cancer (ALL) in Oct '08. After battling and appealing she now receives DLA, band low for care and high for mobility. My mum has had to give up her job to look after my sister, as the chemo is really taking its toll on her. My mum could go back to work but the thought of having to leave my sister at home everyday to cook, clean, etc just mortifies her. Plus, the drugs my sister is on mixed with the emotional effects of having cancer mean that at times she gets so upset.
So anyway, the facts are:
my sister is receiving DLA.
She has a blue disabled badge
She has a medical walking stick and has been offered a wheel chair
Why should my mum be forced to go back to work and my sister be left at home all alone?! Oh, also, when my mums CA was denied they told her it was because my sister is only on the low band for disability. They think she is still perfectly capable of looking after herself.
They have offered my mum £60 if she claims ESA. £240 a month isn't liveable, when looking after a house and a sick daughter. Especially after going from full time work to this low amount. Its crazy.
Is there anything my mum can do? It's getting her down so much, because the last thing she wants to do is leave my sister at home to go out and work.
I wish the people who made these stupid decisions had an ounce of insight into what its like dealing with a young cancer sufferer, let alone anyone with cancer. When my sister was first diagnosed the last thing we thought we'd be worrying about was finances.
My sympathies to you all Please tell her to appeal and if you can, look on the website at the relevant sites and pick out all their qualifying rules and use them to your advantage! Their attitude is ridiculous and I wish you well to fight it! Bit of a pain though but try to keep everything in writing as proof! Good Luck
if your sister needs almost full time care you need to push for the higher rate of care component appeal that part of the award, the hospital and your GP should give you support with claiming the higher rate , its a hard road but with medical support you may well get there,
there are rules regading chemo and cancer and its fast track the DLA/Care know that,
the problem with the system is
a) the person making decisions is not medically qualified
b) it all depends how the forms were filled in , all answer you give must be worst case, things like 3 out of 7 days the person can cope , go against there scoring of points,
Check if you have a local support group they can help with an appeal, the Local Council should have details, also get the Councils occupational therapy involved
I'm a little bit confused by your post... you say they have offered her £60 a week for ESA (don't know what that stands for, sorry) which you say would be unsufficient. But CA is less than that anyway. :-? (about £50/week)
You can only get CA if you are a FT carer (35 hrs a week) and you can earn a little bit (about £90 a week, I think) before it affects it, so if you thought your mum could keep on working FT and get CA on top, it doesn't work like that... Apologies if I misunderstood your post, but that's how I read it.
Either way, do appeal about DLA. To help with the rating on care, make sure you stress the hygiene help (toilet/bathing/dressing) and that she needs help at night too (makes the difference between medium and high rate of care).
Sorry to be blunt, but is she classified as terminal? If yes, then you should make sure that the claim is dealt with under the "special rules" for which you should have had a leaflet at the same time as the original claim form. The DLA appeal process is taking over 12 weeks at the moment, so claiming under special rules should ensure a swifter response.
If she's not terminal, then normal timescales apply, but it gets backdated if successful and of course it is good news for your family.
The doctors haven't said much about her progress, just that she's doing well. So im guessing from this she isn't terminal. It's not a word i think about tbh. My mum is my sisters full time carer 24 hours a day 7 days a week, my mum has quit her job so is not earning any other money. I know that with CA you get less then £60 a week however you get many more benefits, i.e. income support and housing and tax benefits. ESA stands for Employment and support allowance.
Thank you for everyones response, my mum has rang MacMillan today to ask for advice from them.
Our washing machine has just conked out. Garghhhhh. Fingers crossed MacMillan can help us with that though
thanks again everyone, and if anyone else has any advice it'd be greatly received.
In that case, appeal, appeal, appeal. The DLA stats are appaling, they turn down or give the minimum on 1st claim 2/3 of the time, but get reversed on appeal on a massive rate, so it is really worth going for it. It defies common sense anyway that s/one who gets high mobility should only get low care.
It may be that in an effort to preserve your sister's dignity, you downplayed her difficulties, it is a natural instinct to do so. I was in tears for most of the time I filled the forms for my son, feeling I was desrcibing a monster when he is a lovely child... But DLA relies on knowing the worst times, not the good ones, so you must harden yourselves and describe what the worst case scenario. If there have been times where you had to change the sheets at night, or she needed a drink, when she needs helps to go to the toilet or get in the shower, every time that your mum gets up day or night to give her a drink, or wipe her face, all these things which add up to one thing: round the clock care. This is what will build up a picture that will ramp up the level of award.
If you need help with that, just holler.
Re: washing machine, get mum to apply to the family fund. As your sister is 18, I don't know if she'll fall in the criteria, but it is worth a shot anyway.