Forum

Should I claim DLA?

I’m hoping someone can tell me just how bad the symptoms of MS have to be before you could claim DLA. I’m finding it a bit puzzling to say the least. Considering the nature of MS in that I can feel really out of it and virtually unable to do much of anything (walk, cook, shop, housework etc) for about a month, and the next minute be almost right as rain, you hear of all these stories about people being spied on to catch them out being able to walk OK etc and their benefit being stopped when it could be just one of their ‘good days’. People can make me feel guilty about not being able to do the housework etc as it is without having to look over my shoulder all the time in case someone’s there with a camera! So because you can go for long periods when you feel OK but then relapse, is DLA a good benefit to claim for or is there a more suitable one?

short answer - YES!

My brother has had a progressive liver disease (PSC: Primary Sclerosing Cholangitis) for a while now, but it has recently deteriorated sharply, to the extent that in the last three weeks he has been hospitalised twice, had two blood transfusions, a stent in his liver (which moved and caused excruciating pain) .

He’s been able to go home pending specialist/surgeon advice later today. I was able to visit him over the weekend (which doesn’t happen often enough) and - God love him - he’s in constant pain, gets out of breath climbing his stairs and gets physically tired with very little effort.

As he can no longer work (was self-employed so - naively - hadn’t made any financial arrangements for the future yet) I mentioned that DLA may be appropriate.

Is he elligible for DLA and (having taken 3 attempts to apply for DLA myself before my Neuro successfully applied on my behalf) can anyone offer any suggestions on filling in the application form so that as little time is wasted as possible?

Many thanks for your kindness - truly appreciated!!

Hello

I’m waiting for a tribunal date for my DLA claim that was refused following an assessment by one of those good old Atos Assessors. What was discussed during this assessment was not what he then put on his report and I have written a statement to take to the tribunal hearing detailing the discrepancies. This was in February 2013.

I am beginning to get nervous about the whole tribunal stuff now as, like you, I have good and bad days. My biggest problem is the chronic fatigue (I’m suffering from it today and everything seems such an effort). There’s a part of me that’s thinking just phone the tribunal service and call it off but the other part is thinking that I don’t want MS to rule my life (I was dx with RRMS last year).

Anon - I suspect that my original application form had words like sometimes and variable so any ideas on alternative wording would be very much appreciated

Take care

Pen xx

Hi Liamsquash, yes your brother should certainly apply for DLA.

He can’t do better than joining the ‘Benefits and Work’ website. It’s about £19 for year’s membership & worth every penny. They have step-by-step guides to all benefit applications and appeals… written by lawyers who are benefits experts.

I was refused DLA until I joined B&W… their guides are really good.

Pat x

I often wondered the same question as the op. When you see on tv how they’ve followed someone and one minute they’re struggling to walk next they’re playing golf. That sums me up. I go weeks struggling then I’ll have a good day. I have times when I can’t use scissors, write, tie shoe laces do buttons or zips, can’t chop veg safely or turn tap on. Now my boots are done up so I can push my feet in,I buy chopped or frozen veg. My trousers are elasticated and there are lots of things I’ve altered to cope. But on the surface. I look ok. So I’m not sure about dla. Liamsquash, it certainly sounds like your brother could claim. That sounds terrible for him, hope things get better. Lynn

I have to slightly disagree with this post. I understand that it is important to make it very clear how MS affects your day to day functioning. However it is dangerous not to indicate if your condition is variable. Linda described, in her original post, a swing from unable to do much of anything to just about OK. If she were to fill in the form based on her worst day, never mentioning variability and get called for a medical on one of her good days it would look ridiculous

The assessors know that MS is a variable condition for a lot of people but you need to spell this out just in case you are fit as a butcher’s dog on medical day. PIP is going to make this a bit easier since variability is written into the system 50% of the time being the guideline.

I agree wholeheartedly that you should fill the form in as an unambiguously as possible. My mindset when doing it is that I am writing for a 16 year old clerk with no experience of my condition or indeed of life. I think most people fall foul of the form because they are too positive about what they can do and do not spell out enough what they can’t. If you tick the “it varies” box you MUST follow that up with a clear description of what that means.

I would also second people who have recommended Benefits and Work. Membership is about £20.00 a year and important because the advice is constantly changing and evolving as claimants win at tribunal.

Jane

Thanks peeps, some great advice there! I already have DLA, a disability support group helped me out with the wording but even so, because I feel bad one day then good another, I continually feel guilty about having it and a bit paranoid. (cameras!) Also, I’ve just had my contribution based ESA stopped and they wont switch it over to the Income based as I’ve now got just over the allowed savings… 1p over! savings that have come directly from what I’ve been able to put aside from my DLA; next time I’ll take it straight out of my account and put it under the mattress!!

LoopyLinda, surely there is something you need to buy to help with your MS… and would take your savings under!!!

You can spend money from savings on necessary things… and remember to keep the receipts.

Pat x

Hi Anon, I hope you don’t mind me asking but could I have a look at your form too please? I have the B&W guides and am half way through my form but I feel like my head is going to explode!

I got high rate mobility and low rate care on reconsideration last time but would really like to get medium care this time.

I’ve just sent in my ESA form but had forgotten just how stressful it was filling them in…

Mags xx

[/quote] You are completely and utterly wrong![/quote]

If I am completely and utterly wrong I apologise most sincerely – my only aim is to help people get the benefits they deserve.

I know that the advice is often to “put your worst day” but where people experience wide fluctuations it is playing with fire to indicate that the worst case exists 24/7. If you are on an up day at a medical it makes it seem as though you have lied on the form and is an invitation to the assessor to fail you. My advice to describe fully what you mean by fluctuation and how this uncertainty affects you covers all the bases. To state that you can never do a certain thing when a medical examiner can see with their own two eyes that you clearly can, is a recipe for disaster.

Like all forum advice the original poster can pick and choose as she likes. I have no axe to grind. Even though I am SP I still experience fluctuations in my condition and said so on both DLA and ESA forms, neither of which were unsuccessful.

I’m trying to fill out a DLA claim form and having difficulty with the bit about how far you can walk without discomfort. On a bad day, it’s about as far as the end of the garden (which is not big!) before feeling worn out and I have trouble getting up the stairs. But on a good day, it’s further. I’m having another relapse with severe pins and needles in my feet which is making walking very uncomfortable all the time at the moment.

I’ve no idea what to put, I don’t want to be untruthful but at the same time, I’m finding moving about very difficult at the moment.

Lynne

[quote=“LoopyLinda”]

Thanks peeps, some great advice there! I already have DLA, a disability support group helped me out with the wording but even so, because I feel bad one day then good another, I continually feel guilty about having it and a bit paranoid. (cameras!) Also, I’ve just had my contribution based ESA stopped and they wont switch it over to the Income based as I’ve now got just over the allowed savings… 1p over! savings that have come directly from what I’ve been able to put aside from my DLA; next time I’ll take it straight out of my account and put it under the mattress!!

[/quote] Can you explain why it’s important to have income related ESA?, I’m curious as I was awarded CB ESA? Is that ok?, not really up which one is better just gladi was awarded it, assume it must be the right one. Try not to worry about your dla I expect alotof us feel like that.

I completely agree with the people that have suggested subscribing to the Benefits and Work website. It was the best money that I have ever spent. The forms for DLA (so I presume the new PIP forms as well) were lengthy and took absolutely AGES for me to complete but the great result was that I was awarded DLA (higher rate Mobility and mid rate Personal Care) without an assesment.

I would not have been able to complete the forms properly without Benefits and Work - and I am a lawyer and I complete forms and make legal applications every day (criminal law not benefits) but these forms are impossible without professional guidance!

On important thing I learned was not to try to get all of your answers to fit into the space given on the form. Use additional pages so thast you can give a proper explanation of what is the matter. eg don’t just say “I have difficulty walking” explain what those difficulties are. (I can’t walk in a straight line and so, if I try to walk alone up the street I have a habit of walking into other pedestrians or street furniture! I haven’t fallen for a while (touch wood!) but I stagger and lose balance for no reason which means that the person I am with has to save me and stop me from falling) etc etc ) Give specific examples where you can. (When I have fallen in the street I have ended up in A+E with nasty facial injuries)

If you have copies of your medical reports from your neuro and your MS nurse it helps to include them with the form (it meant that they didn’t have to go through my neuro who was a lovely man but TERRIBLE at paperwork)

My form ran to 30+ additional pages and so I think that I bored them into submission!!! Completing my DLA form was a very hard experience for me. I had to stand back and take a full and proper look at what my problems and genuine needs actually were and that was very upsetting. I am the sort of person that tends to “keep calm and carry on” so I tend to take things for granted and think that that is just the way things are so I should just get on with it. I had “accepted” that I couldn’t walk upstairs carrying anything unless I could put it in a bag that I held in my teeth so I could keep both hands free to support me (or even go up on my hands and knees on bad days!)

Accepting that there were aspects of my everyday life that were not normal" hit me very hard and so I cried on many ocassions while I filled in those ******* forms.

Good luck. Don’t let the “you know whats” wear you down - wear THEM down instead.

Hi’ya peeps! I’ve not been around much lately but thought I’d stop by to ask whether I really should contact someone with a view to getting my DLA stopped! I’m getting the high rate mobility and the middle rate care as when I claimed I definitely qualified but the last few months I’ve been feeling much better although I still have lots of little problems like getting tired extremely quickly and still tend to smack myself into the walls every now and then lol! Because of this I’m feeling REALLY guilty and nervous about having DLA at the moment, given the situation regarding these ‘assessments’ and that if I were to have one (today) I’d probably fail it, do you think I should let them know how I’m feeling and how my MS is affecting me at the moment with a view to them possibly reducing or stopping DLA or am I worrying needlessly? It’s really getting to me now as I’d like to try maybe using a personal trainer at a gym to get some exercise while I feel able enough to do it and hopefully improve my core strength/muscles. I don’t want to seem like I’m scrounging but don’t want to lose it in case I become worse again! Help!

That’s a really difficult one to answer Linda because as you know, it’s easier to have it taken away than it is to get, and I’m sure many others have felt this way. The qualifying period for PIP (what used to be DLA) is 3 months. Why don’t you keep a diary of how your symptoms affect you for the next 3 months, and if you don’t feel you qualify for the same level of care (I say the same level, because even if you improve you may be entitled to something) then let them know?

Mags xx

Anonymous

I could do with your support & advice in filling the forms in please can you PM your form. I’m stressing and working my self up about completing the forms already got the relase symptoms to deal with.

Thank you in advance

Crazy Chick

x

Anonymous

I could do with your support & advice in filling the forms in please can you PM your form. I’m stressing and working my self up about completing the forms already got the relase symptoms to deal with.

Thank you in advance

Crazy Chick

x

Not sure if this has already been mentioned but, when describing what you can do, then ‘can do’ means repeatedly, consistently, within a reasonable time frame and to an acceptable standard. Also the activity should not cause severe discomfort such as breathlessness, pain or fatigue.

A question my husband and I have been asking for the past three years!!! I have lost count of the number of times I attempted to fill a DLA form in (and had to keep sending for new ones as the time ran out) We had a horrid experience with the advice shop (the place everyone tells you to go for expert help in filling the form in) and now that hubby is worse, we are reluctant to go there again.

Its an absolute minefield!!!