DP refused DLA. I don't think I have the energy to appeal

[ReformedCharacter]

DP has arthritis - some debate over whether it's rheumatoid or psoriatic type - and he is in pain and miserable all the time.

He's not been able to work for the past 3 months and I am really worried about him losing his job - can't expect his employer to keep paying him long term, and he isn't getting better.

The letter from the DLA came yesterday. I am so fucking depressed about it. I haven't even been to bed and need to get DS up in a minute. I don't want to spend months waiting for an appeal to just be turned down again.

DP is determined to go to appeal but he's just crap at these things and I feel that all the responsibility of it will be placed on me again. I already feel like shit that the claim form that I helped him fill in has failed. Don't want to have to do it again.

I've found out about getting help from the CAB and have a telephone number that he has to phone today to organise it. I'm just so incredibly tired of it all.

We live in a second floor flat that we have no hope of moving from and DP is more or less housebound up here as he finds the stairs too difficult to manage. So I'm left with doing everything outside and because he's so depressed I do more or less everything indoors as well.

I really had my heart set on him being awarded DLA. It would have meant that we wouldn't have to worry so much about him losing his job. I feel like going to bed and hiding from everyone.

I'm so tired of being positive and understanding, and I know it's mean but I feel cheated that I'm only 34 and am caring for my disabled partner. I never thought I'd be in a situation where I honestly didn't think there was a solution that would make us all happy. Everything seems so bleak and shitty.

I'm so sorry Reformed.

I know it's hard but please don't give up on it. Give them a call, tell them you want to appeal and get the forms then have a think about it. You only have a certain about of time to appeal and you don't to miss the date and then regret it. Initially they'll do a reconsideration (someone else looks at the claim) and sometimes you can get awarded without it going to full appeal.

I dont know if its any help but i think it's quite common for them to refuse the first time around...Im in the midst of an appeal for my dd who was born with quite rare and serious heath problems..as her condition is so rare it doesn't fit anyof the flip down boxes on the system and they made a decision based on a condition they weren't aware of. This is because a decision is made by someone sitting behind a desk and not a medical professional. You can ask in your appeal for a preofessional to look at the case.

I've already lost my income due to my daughter having 9 ops in 10 months so I know how you feel....I think at the moment, with the spending cuts there are so many people claiming dla that shoutldn't be it's made it more difficult for others with actual problems to get help.

Go for the appeal if you think he is really entitled.

Best of luck

Are you getting carers allowance? You probably should be.

Also do appeal - there is no point giving up at the first hurdle. Yes it's bloody hard work and shouldn't be that hard but but do seek advice and get started.

And get some sleep - everything feels much worse after a sleepless night.

Oh yes you must appeal- you will feel better about things after a rest.

Its a shock to find your dp ill and depressed especially so young,but lots of people learn to live with it.

Recognition of his disability (with a dla award) will give you access to other things

financial help/carers allowance
housing support to be rehomed
emotional support
and the job centre are looking at supporting people with disability in returning to work not so much of right tell us why you cant work but more a lets see what you can do.

A lot of it is about getting people of long term benefits but a bit of support can go a long way in helping people who want to work ....work.

It might be an idea to get the GP to look at your dp about his depression.

I do feel your pain.

Ah, you lot are lovely. Thank you for the support. I have just had a big self-indulgent cry and feel a bit better now.

Sugarbea, I'm so sorry to read your post. I can't imagine how difficult those 10 months must have been for you. Good luck with your appeal x

You are all right about the appeal. We have nothing to lose after all. I was just stamping my feet a bit because it feels so unfair and I blame myself for not doing a good enough job with the claim form. I've spent the night looking at how other people completed their claim forms and there were so many things that we should have put down but didn't. I was too eager to get it done and now I'm cross with myself.

Whomoved - no I don't get CA. I don't know anything about that as it happens.

I'm going to sort DS out and then come back for a sleep. Feel extremely tired now and at least I won't be eagerly listening out for the postman this morning

If anyone has any knowledge of the appeal process I'd be very grateful. Feel full of dread imagining the stress of an appeal board. Although I guess it's not me that they will be directing their questions at, so that's one good thing.

I know it's for DP and not DC but for info about DLA appeals, I would direct you to SN. Lots of help available there. I'm really sorry you are having such a shitty time, DLA forms are so fucking depressing aren't they? Hope you get it sorted, def do appeal if you feel you can as it will be worth it in the long term.

I haven't got appeal experience but i really urge you to appeal.
And get help filling out the form, it's bloody miserable doing it but you really do have to be as negative as possible and that's hard when you're talking about someone you love - much easier for an objective helper.

Also, are you in a council flat? or self-owned? just wondering why you believe you have no hope of moving?

Once you've got the DLA sorted then you would definitely get more points on the council system to move to a ground floor/building with lifts/etc.

Also once you've got the DLA sorted then you can sort out the Carers, can't remember exactly if it's you get CA for medium or high DLA or both, sure someone else will remember.

Also he should not be in so much pain, i have a friend with rheumatoid arthritis and she has just changed meds, she is not as bad as your DP sounds though, but she is not in constant pain. He should get the docs to reassess his meds.

Lastly, you have to allow yourself some hide in the bed and cry moments, it's crappy :(
Maybe check with your GP if you could benefit from some ADs too - they helped me, just for the few months i needed them.

I would ask for reconsideation instead, which gives you a few weeks to gather more information and it will be looked at by another assesser. After that you can then appeal if needed.
DLA suck, they are terrible.

I would go for a reconsideration first, but really no point doing it without providing extra info.

Speak to the GP and let them know DLA has been refused. Ask them to write a letter of support.Make sure they know about the problems he's having -including the depression.

If anyone else is involved in your DP's care, Physio, OT, Hospital DR - then again try to get them to write letters of support.

Look at the DLA refusal letter to see EXACTLY why he was turned down. I find the most usual mistake is too much about the illness and not enough about the actual effect it has.

To get Carers Allowance, you need to get Middle/High Rate DLA Care component awarded first.

keep trying don't give up i have heard that they do refuse a lot first time around.leave for a few days if you need to.it won't seem so tough in a few days time.good luck.

Hi.
I'm still waiting for mine. Someone directed me to the MS web site (this is what I have), it said to write a diary of how the MS affected me during an average day, ie:

7am: woke up but am too exhausted to get out of bed. Need son to make sure I am up or I will just go back to sleep. Takes frequent attempts to get up.

5pm: fall asleep whilst cooking the supper so it burns. Can't carry pans with hot water as I get pins and needles in my hands. I need help chopping vegetables as I am incredibly tired and regularly burn/cut myself (weekly).

Don't give up. I hope this helps.

DO appeal. I volunteer as a CAB adviser and it is very common to be turned down at first. Get an appointment at your local CAB they will help you appeal. Unless his condition has worsened since you claimed a reconsideration won't work.

You want to have an oral hearing with the appeal tribunal. Get as much supporting documentation from doctors/consultants as you can.

Watch out for the time limit for appeal.

The problem with DLA forms is that you need to fill them out as though it is your worst day. Funnily enough people are often too positive about their conditions.

Even though he may not have help dressing/cooking/bathing etc that does not mean he does not need it.

Good luck.

Once he has been awarder medium/high care you can apply for carers allowance.

RC

The first satges of appeal aren;t ahrd at all- we've been through tehm with ds3; he went from refusal to HR care overnight.

Indeeed. with Sn kids i note an almost automatic refusal of about 50% of applications; I do suspect they have two trays they chuck them in alternately, one for assessment and one for immediate refusal.

Good luck

I agree with the others, please keep applying. They seem to have a default mode of rejecting every first application.

I can imagine why you feel so down though. It must be so disheartening, as if things are not hard enough caring for your ill dh.

Wishing you loads of luck.

There is a forum called 'benefits and work'. It costs about £15 to join and there is loads of extra information in the member area. It gives lots and lots of help for dla, and ib - worth a look.

Hope it helps and good luck with your claim.

Bumping to say thanks

We're in touch with CAB now and have been advised to ask for a reconsideration, just to give us a bit of extra time I think! DP has an appt. with lovely CAB lady on 3 Nov to discuss the appeal process.

I don't know if this is intended common, but this process of claiming DLA has made me feel like a whinging, petty-minded scrounger. The decision-maker's conclusion that DP can do everything implies that he is just lazy and I am expecting compensation for having to pick up the slack. The DM either didn't read the form or he thinks we are liars! I wish they had sent a doctor here to assess him so they could have seen how his knees, ankles and elbows are swollen, and how he grimaces when he stands and how long it takes him to get down the stairs etc ...

Anyway, I'm relieved to have the woman at the CAB on board.

Glad to hear things are looking up - we were in this situation a few years ago - (DH has MS)

try and put down all those things that you do for DP because he can't do them - we said stuff like he needs full time help in his role as a father as if DS climbs on a table he can't get him down

we had a fabulous guide on how to claim DLA but I can' find it on the web anywhere now - I have a hard copy of it but not sure how to get it to you?

RC - good. I agree with how the form makes you feel. And we wished many a time that someone could just come round and SEE DS2 to avoid all that depressing negative form filling :(

Chin up, the CAB people should help a lot.
Maybe start making notes about all those little extras for that big empty page at the back of the form.

ReformedCharacter don't lose heart

The trouble with DLA is that there are strict criteria. If you don't demonstrate on the form that you meet the criteria, your claim is rejected, because the Decision Makers have to justify their decisions on the evidence they are given. There are key words that they look at, and there is a decision makers' guide

"61053 The day condition is satisfied if a person is so severely disabled physically or
mentally that, they require from another person

1. frequent attention throughout the day in connection with bodily functions1 or
2. continual supervision throughout the day in order to avoid substantial danger

to themselves or others."

This is the basic qualifying test for DLA. (The other, the 'cooking test' is relevant for low rate care only).

What that means, is that it really isn't enough that your DH is in pain, or that he finds it hard to get out of a chair, but manages to do so with a little more time, or whatever.

Your DH will only get DLA if he can demonstrate that he needs "attention" or "supervision". The other key word, which appears later is "guidance", which relates to outdoor walking.

So if the claim form says "I find it very hard to get out of my chair, and I have to really persevere, and I get lots of pain, and it really hurts....." then the likelihood is that DLA would be refused.

However, if the DLA form says "I find it very hard to get out of my chair, because my knees are swollen and my joints are tender, which causes them to stiffen and lose strength. As a result, I frequently have to ask my wife to assist me, by bracing herself against my arm as I rise" Then you are showing you need 'attention'.

Or, "I have a tendency to lose my balance, so I need my wife to be nearby in case I fall", which shows 'supervision'.

Do you see what I mean?

My DM went on a course recently about joining the Expert Patient Programme for her arthritis.
Would this sort of thing interest your DH at all? Might make help reduce some of the feeling of helplessness.

More info here

That looks very good pipp. I'll get DP to have a look at it

Lougle, thanks for taking the time to explain that. When we first decided to try for DLA we were only thinking about the mobility component, and possibly low care because he can't stand without crutches (and severe pain), or bend (without severe pain) to get things into/out of the oven. The DM stated that he could cook a meal because he could sit down to rest for a few minutes at a time during the stages of cooking and could use kitchen tools. The DM ignored what we wrote about not being able to actually do any cooking because his hands are holding on to the crutches. All he could actually do is stand and supervise the hob, which is not cooking .

I keep getting confused about the pain aspect of his condition. I understand that if someone held a gun to DP's head and told him to run/walk/jump etc, he could manage it, whereas a person with complete paralysis couldn't. In a day-to-day situation though, I do everything because DP chooses not to in order to avoid pain. If he was living alone he would have to do more, but it would be a shitty existence of microwave meals, dirty clothes/surroundings and isolation because I believe that he would still try to avoid the pain of moving around.

I'm going to keep reading your post and hopefully it will sink in. I do 'get it' but God I get so stuck when it comes to applying it to our lives.

Oh, littlebluepills, we should have wrote about DP's difficulties with fatherhood. It's very painful though isn't it?

DP was DXd about 5 years ago, but has only just come out of denial about it. Up until he had a failed op in June he was describing his enormously swollen left knee as an 'old sports injury' and would not talk about the blood tests that confirmed rheumatoid factor, or the op he'd had on his right knee, or the reason he was on DMARDS etc. He is still determined to get out and play football with DS next year - it's always 'next year'. DS is now 8 and he's never managed it. They did start going to watch our local team in the summer but that had to stop because the seats are up the stairs in the stadium and he couldn't get up there one day (and felt foolish in front of DS ), and wouldn't ask for help so they came home. He copes by not talking about any of it.

I remember being pregnant with DS and DP being so happy because we knew we were having a boy and he was so excited about all the things they were going to do together. DP even bought a bike in the summer and they were going to go out for days at a time together. Of course, it's still nice and shiny in the shed and we talk about how they'll be going out together 'next year'.

Oh yes, and we've applied for an allotment and DP is hoping it will be an unworked plot because he can't wait to do all that digging. He knows the truth really.

RC it's so hard isn't it. The whole process is so shitty.
How I think of it is filling it in explaining how my life is different to someone of my age and in my life situation. So for example, often I can't look after my children because of a flare up of my condition so my husband has to - it's showing them the help you need rather than just talking about the condition itself.
A good percentage do get through on appeal. I'd encourage you to get supporting letters from any health care professionals your dp sees - I think these can make a big difference.
All the best - hang in there with it and don't let it get you down too much.

Absolutely agree with Lougle. My DH has been on DLA for 8 years. He has Narcolepsy which is a condition 75% of people have never heard of and the remainder ask 'Is that the one where you fall asleep alot?' You have to live with the condition to understand the intricacies. I have been the one filling in his forms for the last 8 years and very carefully wording it so that the emphasis is on the amount of assistance and care he requires from me. Also emphasis on problems functioning daily in his role as a father.
Please remember to include his state of mind. This must be very hard on him mentally and this needs to be considered. From being in your position I understand how hard it is on you too.
Please keep at it