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Dla And Incapacity.


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#1 too exhausted

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Posted 03 September 2008 - 04:28 AM

If you are applying for any of these benefits then this site is a must for you. It tells you what the questions are actually saying and what is the required information they want from you. The system is computurised and is based on points as to what you are entiltled too. You can get help with this form from a solicitor or CAB. I couldn't afford a solictor or get up early enough for CAB. I wish that I had read the information on this site before filling in my applications because the outcome would have been different. I didn't realise how I had developed coping mechanisms for most of my symtoms therefore didn't write them down. What I thought was normal actually isn't and a none PWN doesn't have those problems.

http://www.benefitsandwork.co.uk/
Good luck with DLA it took me a year to get this benefit. Of course it is back dated from when you apply but the stress was unbearable having to go to appeal which took 8 months from my submission. Best to fill the form in correctly than having to fight for what you are entiltled too.

#2 bagpuss

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Posted 07 September 2008 - 07:18 AM

QUOTE (too exhausted @ Sep 3 2008, 10:28 AM) <{POST_SNAPBACK}>
If you are applying for any of these benefits then this site is a must for you. It tells you what the questions are actually saying and what is the required information they want from you. The system is computurised and is based on points as to what you are entiltled too. You can get help with this form from a solicitor or CAB. I couldn't afford a solictor or get up early enough for CAB. I wish that I had read the information on this site before filling in my applications because the outcome would have been different. I didn't realise how I had developed coping mechanisms for most of my symtoms therefore didn't write them down. What I thought was normal actually isn't and a none PWN doesn't have those problems.

http://www.benefitsandwork.co.uk/
Good luck with DLA it took me a year to get this benefit. Of course it is back dated from when you apply but the stress was unbearable having to go to appeal which took 8 months from my submission. Best to fill the form in correctly than having to fight for what you are entiltled too.




glad it is all working out for you after such a long time.....i went to cab and wasnt as lucky as you .the girl i got said"god i bet its great having narcolepsy,sleeping all the time. i wish i had it" i left in tears

#3 too exhausted

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Posted 07 September 2008 - 01:31 PM

QUOTE (bagpuss @ Sep 7 2008, 01:18 PM) <{POST_SNAPBACK}>
glad it is all working out for you after such a long time.....i went to cab and wasnt as lucky as you .the girl i got said"god i bet its great having narcolepsy,sleeping all the time. i wish i had it" i left in tears



I had gone to CAB four years ago and the man (working there at the time) told me that sleep isn't a disability. I did still apply however but was turned down. So I thought that he was right. It was only hearing about other PWN claiming DLA that I thought about applying again, especially as my symptoms had got worse. I know how frustrating it is when even my sister says 'How nice to be in bed all day, I've been at work all day'. Yes she has been living and not watching her life go by in a deep sleep. Also she works part time, can stay awake every evening past 11pm (not 9pm) has weekend off and six weeks holiday a year. Gets paid for it aswel. I don't think people understand that we are never refeshed, never fully awake and never far from falling asleep when we stop moving, or even going into automatic behaviour for hours at a time. Both my friends said to me the other night that they both have automatic behaviour when driving, I asked them about night terrors, hallucinations, falling asleep whilst walking, swimming, standing etc and strangely they don't have these symptoms.
You are intiltled to DLA if you meet the criteria, don't give up, all the help you need is on that website. There are step by step instructions as to what the question requires from you. There is probably more information than what a CAB employee will know. It will take you a while filling in the form, do it in pencil first as I think our short term memory often allows us to read questions wrong. Go to your GP, Specialist and get letters from them before sending in your application form. Ask your GP for copies of any tests that you have had regarding your diagnoise. If a close friend or anyone else you think can help your case also get them to write a letter explaining how your symptoms effect your daily life. The problem that I had with filling the form in was that I had put so many coping mechanisms in place regarding my symptoms that that I missed out what they were asking. For example I don't bath as I fall asleep within minutes so I put that I shower. I should have put that due to my sleep attacks (fits) I am in danger when having a bath by myself and need somebody to watch over me to make sure that I don't drown. It never occured to me as I just don't put myself in that danger.
If you have legal cover on your home insurance then these solicitors may be able to help you with the form. Good luck.

#4 icequeen55uk

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Posted 02 November 2008 - 02:27 PM

Hi, I'm Lucy. I'm a 33 year old newbie on this board, but I was diagnosed with N and C 5 years ago. I have an older sister who also has severe N and C, she was diagnosed 20 years ago.

I am really intrigued by this topic, as both my sister and I were told that we "were not entitled to any assistance" from DLA, as we are both on meds. Is this not true then? I was told specifically that if I stopped taking my Dexadrine, then and only then would I be entitled to any benefits. If this is false, then I will go ballistic. I have 2 children under ten and don't work at the moment, my husband is the only breadwinner in the house and we lived on £14000 last year. I have had numerous occasions where I have had to stretch my meds out because I have been unable to afford the £7 prescription fee, or have had to pay it with 20p's, because of being broke, and now to find out that we may have been living like this unnecessarily makes me furious. (Especially when there is a member of my extended family who gets DLA because she is obese...)

Can someone enlighten me whether I was mis-informed or not? I would be really appreciative.

Actually, having said that, I have also just been diagnosed with Ankylosing Spondylitis, (Rheumatoid Arthritis of the Spine), so figure the combination of TWO autoimmune conditions means I HAVE to qualify for help....right?? (God, I hope so)

Anyway, I hope to get to know everyone on here, as aside from my sister I've never met another Narcoleptic or had any discussion with any other PWN. I think that the lack of support for PWN in the UK is apalling and cruel. Giving someone a diagnosis and a prescription for incredibly strong stimulants, then sending them off to cope alone is terrible, IMHO.

All The Best, Lucy.

#5 too exhausted

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Posted 03 November 2008 - 07:49 AM

[quote name='icequeen55uk' date='Nov 2 2008, 07:27 PM' post='6496']
Hi, I'm Lucy. I'm a 33 year old newbie on this board, but I was diagnosed with N and C 5 years ago. I have an older sister who also has severe N and C, she was diagnosed 20 years ago.

I am really intrigued by this topic, as both my sister and I were told that we "were not entitled to any assistance" from DLA, as we are both on meds. Is this not true then? I was told specifically that if I stopped taking my Dexadrine, then and only then would I be entitled to any benefits. If this is false, then I will go ballistic. I have 2 children under ten and don't work at the moment, my husband is the only breadwinner in the house and we lived on £14000 last year. I have had numerous occasions where I have had to stretch my meds out because I have been unable to afford the £7 prescription fee, or have had to pay it with 20p's, because of being broke, and now to find out that we may have been living like this unnecessarily makes me furious. (Especially when there is a member of my extended family who gets DLA because she is obese...)

Can someone enlighten me whether I was mis-informed or not? I would be really appreciative.

Actually, having said that, I have also just been diagnosed with Ankylosing Spondylitis, (Rheumatoid Arthritis of the Spine), so figure the combination of TWO autoimmune conditions means I HAVE to qualify for help....right?? (God, I hope so)

Anyway, I hope to get to know everyone on here, as aside from my sister I've never met another Narcoleptic or had any discussion with any other PWN. I think that the lack of support for PWN in the UK is apalling and cruel. Giving someone a diagnosis and a prescription for incredibly strong stimulants, then sending them off to cope alone is terrible, IMHO.

Both you and your sister should apply for incapacity benefit and DLA (both care component and mobility). Put down every condition and symptom you have in great detail, how these effect your daily living. I have sent you a PM. Please make sure that you have help with filling in the form and get your GP?sleep specialist to write you letters about your condition to include with your application.



#6 hathor

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Posted 04 November 2008 - 07:45 AM

Hi. i get DLA for my narcolepsy and cataplexy. i have received it for nearly 15 yrs.it is difficult to get and it gets reveiwed every 4 years. im am currently waiting to hear if i have got it again. i have been to tribunals twice and the last time i left in tears they made me feel so small. after that tribunal i was still told i couldnt have my money back so i went to see a solicitor. after asking me loads of questions the solicitor told me i definatley qualify for DLA at the same rate as someone with epilepsy. a week later i went home and found a giro with all my money back paid. i used to get middle rate care and i think it was middle rate mobility but after going through that i only got lower rate mobility and lower care but i wasnt going to argue.i also receive income support and something on my income support so altogther it works out £113 a week. i live on my own so this is my only income but i get housing and council tax benefit as well. so it is definatley worth fighting for because it can be got. i find it annoying being compared to epilepsy because what is the chances of someone with epilepsy living with their condition and having fits at least 5 times a day if not more and not being able to wake up!!!!personnally i find N & C worse because of how much it affects daily life.

#7 hathor

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Posted 08 November 2008 - 02:57 PM

QUOTE (hathor @ Nov 4 2008, 12:45 PM) <{POST_SNAPBACK}>
Hi. i get DLA for my narcolepsy and cataplexy. i have received it for nearly 15 yrs.it is difficult to get and it gets reveiwed every 4 years. im am currently waiting to hear if i have got it again. i have been to tribunals twice and the last time i left in tears they made me feel so small. after that tribunal i was still told i couldnt have my money back so i went to see a solicitor. after asking me loads of questions the solicitor told me i definatley qualify for DLA at the same rate as someone with epilepsy. a week later i went home and found a giro with all my money back paid. i used to get middle rate care and i think it was middle rate mobility but after going through that i only got lower rate mobility and lower care but i wasnt going to argue.i also receive income support and something on my income support so altogther it works out £113 a week. i live on my own so this is my only income but i get housing and council tax benefit as well. so it is definatley worth fighting for because it can be got. i find it annoying being compared to epilepsy because what is the chances of someone with epilepsy living with their condition and having fits at least 5 times a day if not more and not being able to wake up!!!!personnally i find N & C worse because of how much it affects daily life.


yey!!! i have just been award DLA for goodso no more filling in the forms every 4 years!!! the letter just said i will get checks every now and again to make sure i get the correct amount of money.so all u people with narcolepsy go for it and claim DLA!!!