DLA help and support, please?

HopeAndDriftWood

Hello,
I'll try and keep this as brief as possible...
I have 'suspected rheumatoid arthritis', officially, but unofficially its pretty much confirmed. I also have spine strain and an unidentified muscle disease of the spine. However, getting medical evidence of this is hard.
Recently I've been struggling to walk. My knees hurt, and I am in agony after a few steps. I spoke to CAB, who recommended I made a claim for DLA, in the hope that I'd get some money for additional help. I'm trying to learn to drive at the moment but on only £50 a week ESA (assessment stage) it's almost impossible, so I'm housebound.

I got rejected this morning. The letter says I can walk fine, and do not have care needs. I dispute this, but I'm unsure whether its worth me even trying now. I CAN walk, but in immense pain. This varies day to day, about 4 days a week I'll be in a lot of pain, but as I'm virtually housebound on these days I don't see anyone to back this up, and they are struggling medically to control it.

I feel crushed...it's like they don't believe I'm in pain, and I hate it. I hate feeling like I'm trying it on, but 4 days a week my life is hell. The other 3 are okay, certainly not pain free, but I'm trying my best to live my life on my own..Just a vent, I guess, but thank you to anyone who read this x

veggyboy

HI I am not an expert, but I would ring them and ask for an appeal (you have nothing to loose). I have problems walking too and got rejected so am appealing. It only costs you your time

[Deleted User]

To OP if you appeal(and you should)then get help from cab or welfare rights with the appeal

HopeAndDriftWood

Thank you both for taking the time to respond...I think I will appeal. Its so incredibly deflating...I think I'll visit CAB next week. Do appeals take a long time?

cattie

You mention that getting medical evidence is difficult, but it shouldn't really be.

Have you had blood tests or x rays to help with the confirmation, or seen a rhuematologist? The more medical back up you have the better your chance of success. Try to gather as much medical backup & evidence as you can before the appeal hearing.

Some appeals are heard relatively quickly, others take months. It's a bit of a lottery & depends on the workload of the centre involved.

Invasion

It's not just about being able to walk, it's how far you can walk without severe discomfort or having to stop. Send a letter quoting the criteria for higher rate mobility, or at least the question that asks how far you can walk before you're in pain. See CAB, and take their advice, good luck!

HopeAndDriftWood

I've got an appointment to see CAB but it's in two weeks so I'm drafting a letter now. I've quoted the extract that says 'without being in pain', and said that I am...
Any other tips? I'm terrible with these letters.

McKneff

Moving away from the DLA i was in exactly your position 20 years ago,
i struggled just getting up from a chair but it does not necessarily you will be this way for the rest of your life. i couldnt even climb the stairs, i was in constant pain in all joints except my back, my fingers were curling.
I was on gold injections, tablets etc injections for years and for quite a long time they worked but i eventually had to keep changing medication cos i was growing immune to the meds.
I am sitting here, lap top on my knee, no pain, no meds for the last 5 years,
i get the odd day maybe once every three months where i overdo things and i suffer for it next day but honestly it may get a lot better when it settles down.
I also work full time in an office, and have done for the last 23 years. i dont even take any painkillers these days.
Feel free to pm me if you need any support. i really do know what you are going through. That early part of my RA was just a total nightmare.

Jojo_the_Tightfisted

Send a brief letter to DLA stating you wish to appeal as you have significant difficulties with mobility and personal care that have not been taken into account. It starts the ball rolling. Go to CAB/Welfare rights and appeal. Start ASAP as time limits are force for most of these things (even though they can take as long as they like to do anything).

Get help from your Rheumatologist - if you haven't got one, insist on a referral NOW as they may introduce a proactive course of treatment which could stop the disease in its tracks and prevent unnecessary permanent joint damage- get a rheumatoid factor test - being able to tell them you have sero negative or sero positive RA, with a CRP of.... and an ESR of .... helps immensely. Ask for a physio referral...tell your GP you are so very very down from the constant pain and inability to get in/out the bath that you feel like giving up without help....approach adult social services at your council for an OT assessment for aids. List the gadgets you use and be clear about limitations - for example, if you use a gripping gadget to open jars, be clear that the pain and weakness in your hands makes it impossible on all but the very best days to operate the thing. Don't forget that you will have care issues if you can't reach back to put on a bra (if a girl) or clean yourself. Don't forget exhaustion. Ask about diagnostic criteria for fibromyalgia too (it's closely connected), Essentially, if you yelp when the doctor prods you on shoulders, elbows, wrists, knees, neck, etc, it's a good chance you can add that to the list. Also you could mention that you are unable to take driving lessons because the pain and immobility makes it impossible to brake, that also corroborates your situation.

As it is, as soon as you are confirmed as having a chronic inflammatory type of arthritis, life gets easier with normal benefits, whether or not you take DLA to tribunal.

Having just helped BF to go to tribunal on failing the PCA for IB, it's easier if you get professional help, certainly less stressful - and, approximately 30 weeks after his money was stopped without explanation, he recieved a back payment for the full sum.

If you were seen by ATOS medical services, even more important to appeal. Most people's opinion of them is lower than low and the more decisions that are overturned, the more likely that these people look bad when contracts are renewed. I had no problems with them the second time round - but the doctor concerned had ulnar deviation in her hands to a lesser degree at age 67 than mine at age 34, so I think she felt more inclined to believe me than the previous one did.

RA is unspeakably £%^& when it first strikes. Once you get over the initial hurdles, it's just a case of getting on with things in a way that suits you. These days, it's always there, but it's not the first thing I think of when I open my eyes in the morning. It's the first thing I think of (after '- $%^& that! It hurts') when my feet touch the floor in the morning, but that's just what happens to some of us...

Chin up - $%^& happens - we don't have to like it, we just have to adapt to the changes.

HopeAndDriftWood

Thank you both so much
I've got a GPs appointment tomorrow, I'm going to tell him I need to be referred and get the ball properly moving.
It's so nice having support, it's been really hard since I stopped having my tutors to tell how I feel about this kind of thing.
It feels like its killing me at the moment, I really hope it does get better.

Thanks again, both of you. It's very, very appreciated

McKneff

good post Jojo, that was exactly how i was when it first started. For first 6 months i couldnt make the stairs.
i slept on the settee for 10/15 minute snatches during the night until the pain woke me again.
Good luck SS and keep us posted.