MY DLA

liesa

have been reading much on here and thought i would write about my experiences,
I have had DLA for several years, since 2006, only had the middle rate care component then but after having a knee replacement 4 years ago this month the pain was worse and now my replacement is classed as a failed knee replacement, i got a higher rate care component and the higher rate mobility, i was amazed that i got them but so grateful in turn my daughter received the carers allowance which meant she came to me several times a month and clean and do other stuff for me, but on renewing it last month the higher rate care was taken off, i then appealed over the phone, still no you cant have it, so i saw people from the federation of disabled people where i live in Brighton and they helped me to appeal again and take to tribunal if nessecary, Its so upsetting as my arthritis is worse now then it has ever been, i find life a struggle constantly and get really depressed and having the DLA care stopped isnt helping at all, they decided after 5 years that i can now hold a saucepan and cook a meal all by myself, oh and peel and chop the veg, so my 15 year old daughter is redundant... i cant do these things the pain is just to much at times, i dont even walk my dog others have to do it for me, getting in and out of a car is so painful and a right struggle, my nights are horendous, have invested in a mattress memory foam topper, so nice and soft, but the hip pain is awful, my fingers are constantly swollen and both elbows are horrendous, have had 3 injections last year in the left one and just pain meds for the right, i cant hold anything not even my handbag when i go out as my arms are so sore when holding arms straight, life is so hard at times often i wonder what is the point of my existance, my poor family are so good to me and they help out so much
sorry for the rambling....

barbara12

Hi liesa
I am so sorry to hear this, how awful for you to have it in the first place then they take it away.
If I was you I would get your MP on the case, there are a couple of people on here done just that and had good results.
I do wish you good luck with it all.

carola

So sorry to hear about this battle you are having - as if the pain and frustration isn't enough, eh?

I agree with Barbara - contact your MP and remember to put every communication to all departments in writing.

You sound like you are in total depair just now. This is understandable with all you have to deal with however I bet your family and friends that are helping you are only too glad they can help you with your daily tasks so please try to take a wee bit comfort and strength from them. I am sure you have been there for them in their times of need.

Try to keep as positive as possible and don't let the b&st*rds grind you down - you will get there, just need to battle a bit.

Sending positive and healing thoughts to you and keep us posted with your progress.
Carol

tkachev

Your daughter will still qualify for carers if you get middle rate care. You say you have lost Higher rate care but do you now get middle rate instead, or nothing? However I didn't think you could get carers if under sixteen.

Keep appealing.The DLA make so many assumptions you have to tell them you cannot hold the saucepan and cut veg. I wonder why they think you can now do these things?

Best of luck
Elizabeth

liesa

Thanks all, i have lost both parts of the care component higher rate and middle, my daughter is a single parent with 3 young children she was so pleased to be able to help me as all my 6 kids have done over the years but i have to help my daughter get here and back home in time for the school run again, she has had a health issue for a few years herself with a back problem and is just the most happiest person to be around, all she wants to do is help me, she has a friend with a car who now drops her to me as im to stiff and in pain to go collect her and get her home (we do this on my sons day off as he lives with me still, he takes her home in the afternoon) if shes feeling up to it she will do all my bedroom out each week which makes me feel really good getting into clean bed and freshly cleaned room, think most ladies will understand how that lfts your mood,

How can an MP help me??? sorry dont understand that,
I have a very understanding and helpful Dr who listens to me and offers a lot of help/advice, also i have a lovely OT who is trying to get me a downstairs toilet installed i also have 'urge incontinence' and with sore/stiff painful joints have trouble getting upstairs to the only loo in time,

regarding my dla renewal form i wonder what i wrote on it, i know it took me 3 days to fill in, i use to love having penpals from around the world could write for England but now my hands shake and hurt to do for sometime, even writing a note for my daughters teacher if nessecary is hard

thanks for your replies xxxx

tkachev

Hi Liesa,

Do tell the DLA about urge incontinence.I was advised to.It might help with your claim in that you have another issue to deal with out and about. I am always failing to get to the loo and it is a nightmare.
Sorry I thought your daughter was 15.
So you went from higher rate care to nothing! What a quantum leap! I bet you wish you could go from HRC to nothing health wise?
It is nice that the family are supportive. Is there someone else who could drive your mobility car(I'm assuming you have a mob car). You can have 2 named drivers on the insurance.Then when you have bad days you can have someone to take over at no cost to them but their time.
Do you have any Social Care; carers through Direct payments? Some of us get money through the council to pay for a carer to help with cooking and shopping for you or helping you to get dressed and showered etc.You could use the money to employ your daughter as long as she doesn't live in your home.

Please do keep appealing as the DLA are making it much more difficult to claim and are turning lots of people down at first. Good luck Liesa,

Elizabeth

liesa

Thanks Elizabeth xx

we have 6 children and 9 grandchildren, the children are aged 30, 29, 27, 25, 22, and 15 the 27 year old and 15 year old are still at home and are usually a great help to me
i have the disability road tax and higher rate mobility so all is fine regarding getting out and about, but i dont go very often, except my husband insists on taking me out for lunch on saturdays to get me out of the house, its the indoor help i could use more....

skezier

Hi Liesa,

Glad you found the forum flower but sorry the dla are doing this one to you. It doesn't make sense to me and I am glad you got some outside help for it.

I sometimes think all they do is try and get rid of the quoter they are told to get rid of regardless of need and I just hope you can get it turned over and reinstated. Nice to meet you and fingers crossed they will do whats right for you soon. Cris x

liesa

Thanks Cris x