How to get DLA and other benefits (long, sorry)

Annah

Hello everyone,
I had a fantastic day out yesterday at the Mobility Roadshow. My plan was to take my friend and her newly disabled son, so that they could get some ideas and see that disabled kids can have fun too. In that respect, it was an outstanding success (if you've never been, I'd recommend it, even if you're not disabled).

I also took some AC leaftlets in case I met any Arthur friends, or companies that might be interested in advertising with us.

What I wasn't expecting was to discover so much more I could do for myself! For instance, the most comfortable bed I've ever laid on in my life, which was not only temperature controlled memory foam, it also had electronic giggery-pokery which inflated the mattress to fit your body precisely, and could sit you up while distributing your weight so you didn't get pressure sore.

I want one. I think if I had that, I could ditch my sleeping meds and nighttime painkillers, but I'd need a louder alarm clock! Sadly, the single costs £1500 and the double, well, double that.

I also have the worry that my car is old, and because of the need to carry mobility equipment and have seats I can easily get in and out of, I'd have to buy another large car.

The issue is that I do not receive any disability benefits at all - I've been turned down three times now, but they lost my claim last time I tried to appeal and then I lost the will to carry on (with the claim, that is). I had given up, even though my joints problems are progressive and my pain is intractable. I just live on my partner's salary, which is OK (we manage) but it is expensive living with a disability, and my son is also disabled (he's autistic).

But also, because I don't get mobility component of DLA, my Blue Badge is only discretionary so I'll probably lose it in September when it expires. I'm not sure how I'll cope then - I'll have to use my scooter a lot more, and therefore walk much less.

I pay £120 per year for my prescription pre-payment certificate, but because some of my meds are 'off list', I have to buy them over the counter, and that's another £40 per month.

Several welfare advisers there told me I really should have another go, with proper support. One lady told me that because my medical history is really complicated, so that doctors struggle to follow it, the DWP tend to just automatically reject it and you have to appeal to get anyway. Only the appeal tribunals have the time to look at histories like mine, she said, so I should expect to have to appeal. I've never properly appealed - the one time I was supposed to, I freaked-out at going (I have mental health problems as well) and so got turned down.

The lady said I need to be prepared to state my case to actual human beings in a tribunal setting, and she reckoned if I did that, I'd have a good case. It makes sense, but is very scary, and I haven't a clue where to go for that 'proper support'. I need an advocate to help me through the lot.

The problems I'm having are chronic pain, particularly bad in my feet, which now have nerve damage. The rest of my joints are fragile and easily injured, due to a connective tissue disorder I was born with (but only diagnosed recently). I have a lot of pain in my hip and one shoulder, as well as my hands. My hands can swell up and be acutely painful, which is a problem as I love to write.

I can walk, but if the question is "How far can you walk without pain?", the answer is, not one step. And each step after that is more painful. Standing still, or sitting is less painful, but I'm never pain free. But because I also have Aspergers Syndrome (a mild form of autism), I often don't show my emotions on my face so don't look in pain (several people have commented that I don't look in pain, so I know this to be the case). Problem is, I am in pain, and sometimes quite a lot of pain. I cope: I just grit my teeth and carry on until I feel like bits of me are falling off, and then limp back to the car, but people were telling me yesterday that maybe I cope a little too well?

I am also recovering from a bone disorder and have problems with vitamin D. I have chronic but mild asthma, severe, life-threatening allergies, skin problems, bladder and bowel problems.

In addition to my physical problems with my joints and chronic pain, as I've said, I also have Aspergers Syndrome. The way it affects me is that I am very prone to anxiety and panic problems and have diagnosed Post-traumatic Stress Disorder from medical emergencies as a kid. I find people hard to 'read' sometimes and I talk way too much. I can't control this (it's called Non-verbal Learning Disorder and its a neurological problem where you can't 'think' silently, inside your head), but it winds people up. And when I wind people up, they get annoyed and don't want to help me. So if I went to a tribunal, I'm scared they'd just think I was irritating.

I am particularly scared of doctors, although I've had a lot of exposure to them in the last few years, so you'd think I'd be getting over it. But every new doctor is a new scare for me, until I get used to them (this relates to my PTSD). So being assessed, and having to talk to doctors about my problems, is all pretty over-whelming for me. The fact that despite everything I've tried, I've been turned down for DLA three times, doesn't help. I'm now terrified for the DWP!

The other thing is that because a couple of years ago, I was using wheelchairs and walkers when I went out, and am now walking most of the time, people think I've got better. Actually, I have in some ways, but mostly psychologically: I'm coping with my pain better. But physically, I'm just fitter because I'm braver, not because I'm truly 'better'. But how can you show someone what you feel inside, or what your pain is? It's hard for anyone. For a person with Aspergers, it's almost impossible.

I don't want to give the idea I'm despairing or anything: I'm made of tough stuff, I think. But I could really use a little help. Ideas appreciated.

Harlansmummy

I definitely suggest submitting a claim and appealing if turned down. Just as you were told, an awful lot of people are turned down but get it on appeal.

I always make sure that I use all the extra space they give to explain things further. So write down that every step hurts. And note everything down, physical and mental.

I also fight through a lot of stuff (eg went camping last week, loved it but wrecked now!!) but when filling in forms I was advised to write about a bad day, not a good one. So on a bad day do you need help getting around your own house? Can you bed down, can you walk, can you stand long enough to cook etc etc. Don't tell them you fight through the pain to do all that, tell them how much it hurts!

It is pretty soul destroying having to lay all your weak points out for strangers to see, and I know I am usually in tears after filling out benefits forms. But in the long run it is worth it, as it does help with maintaining your quality of life.

calcass

I completely agree. I never claimed for many years when I could've done then when I really started to need it kept on getting turned down.

It is soul destroying filling in the forms but you do have to painstakingly answer each question carefully even if it means that you feel like you are repeating yourself. If you find something difficult or cannot do it you must write down why, don't assume that they have any knowledge of your condition or you as a person so you are trying to explain it all to a stranger. As it has been said it is not a nice process and a really difficult one.

There may be Welfare organisations near to you who can help you with the whole process of appealing, check with CAB, or hospital, etc.
Having someone who knows what to do and is not emotionally involved but on your side takes a heap of stress out of it all and I personally would not have gone through it all without the additional help.

Don't give up and stop being a martyr - I know we shouldn't give in to this but we should also listen to our bodies and give them a break when its needed.

Good luck
Calcass

Saphire

Hi,
I am having my first round of applying for benefits and I agree with what others say, it is daunting, humiliating having to bare your soul about your illness. I am trying to just hold onto the difference it will make if there's a positive outcome as every penny counts to make life a little easier. Sounds like you could do with every bit of support you can get your hands on to get you through an appeal. I am sure that there are many others on here who can give you better advice as to how to do that.
Saph x

Annah

Thanks everyone.

I've made the first step - I've approached my local Disability Information Service and they have said they can provide me with an advocate. I may have to wait a few weeks, but they'll do everything for me - fill in the form, escort me to a tribunal if necessary etc. I'm nervous but also relieved - it was much easier to get help than I imagined. Perhaps what I needed to do was actually ask.

I'll keep you posted how I get on.

stickywicket

Ah yes. Asking for help is often the hardest bit :roll: Well done on biting the bullet, Annah. I hope you are successful.