DLA Appeal and Neurologist Appointment

billysnug

I had been getting high care and low mobility DLA for a total of 3 years (1 year to start with and a further 2 on renewal which ended last november) but on renewal last November had everything stopped and couldnt get anything, even though nothing at all had changed if anything things are worse. I am now awaiting an appeal which is due in a couple of weeks time.
As yet they have notdiagnosed condition and although iithoughtyou get DLA for the way you are affected day to day, it seems that because there is no diagnosis yet, that is the reason for not allowing it.
Both of use used to work but now my partner (of 18 years) has given up work and was getting carers allowance to stay at home to look after me
this allowance has now stopped due to not getting DLA).
I have a neurologist appointment tomorrow, (2nd one with him, the last one was 9 months ago) and im wondering what if anything could be asked of him to help the appeal case? In the appeal papers where he has been asked about my condition etc it states 'diagnosis of the disabling conditions Episodes of collapse/daydreaming or poor coordination. Episodes can occur several times a week for no apparent reason'.
Prognosis These problems have been present for some time so i suspect are a chronic problem.
Effects of disabling condition on day to day life if known Not Known.
Are any further investigations planned No.
Would i be able to ask for a report of some kind there and then from him or would i have to wait for his secretary to do it, which would probably take too long considering the appeal is on the 11th.
This is the 2nd neurologist i have seen as the first after seeing me about 3-4 times over the course of about 3 years ended up saying he thought it would just go away and i would be ok!!
Well it didnt and i went back and im seeing this other one now and because of reading through my appeal papers i already know that he doesnt plan anymore tests. So what do i do tomorrow?
I just want to be 'normal' again. I had been a driver for 12 years and had to return my licence due to my condition and not being able to work it feels like you life is on hold and its out of your hands. I just want answers.
If i can not get anything from the neurologist to help my case and i lose the appeal then is there anything else i can claim (we get income support and child tax credit as we have 2 children) as the amount we get is just so difficult to live on and manage with. If not and we have to return to work would i have to put in my application that i have a medical condition where i can just collapse without warning etc, in which case i cant imagine anyone wanting to employ me. If i didnt put the medical condition down though and had an accident at work then what would happen, could they sack me for not telling the truth?
Any help will be much appreciated. Btw i have a disability rights person to represent me at the appeal.

nemo183

Hi there.

You will find there are several contributors to this forum who know much more than me, but for what it's worth:

1) A letter of support from your consultant will always help. And it always pays to make sure that you feel your consultant has the ability to understand your disorder - the more "heavy weight" your consultant, the more notice will be taken of them.
2) (and this is linked to 1) - It's really quite important to have a diagnosis. Without a specfic "label" (and I hate to use the word), it's much harder to access services of any kind. If your current consultant can't actually give you a diagnosis of the problem, apart from the implications of the benefits situation, now might be a good time to politely ask for a further referral - which will almost always be upwards. Not only will a proper diagnosis enable you to get better treatment, it will also carry more weight with DLA or any other benefit.

Finally, it's really worth the effort to get the the right consultant. You have a right to a second opinion, even if it put's your current consultant's nose out of joint.

And really lastly, although I'm sure you've already done this, it is worth the time to trawl your symptoms through Google. Even today, it's amazing how many people can almost self-diagnose via this method.

Good luck!!!

billysnug

Thanks for your reply. I thought it would be better if there was a name for whatever condition i have and this is what i will try for tomorrow. The thing i am worried about is if he says its something but really he is not sure. If they had their way when i was first being investigated i would have been on epilepsy tablets without having had any tests whatsoever.
I have heard others say about how i can get a second opinion but isnt that what i am getting now, in effect? Would it be considered a second opinion due to the fact of having seen the top neurologist to start with, who then said it would go away, but then later getting referred back and seeing an understudy (think thats what they call them, under the top one) to see what his opinions are?
I agree with what you say about searching with google but then you can find yourself having a range of possible conditions. What concerns me is that with the first neurologist when i told him all the various symptoms i had he said that there was too many to be anything in specific. So now when i saw the new neurologist 9 months ago i was very selective about what i told him. I only told him the main things rather than the little ones. Whos to say though that i dont have two different things wrong!
I will let you know how i get on tomorrow.

nemo183

Hi again, Billyslug.

Just a couple of points - firstly, probably the only people that can really help you are consultants at the London teaching hospitals - so if if you live in Burnley, this is a bit of a bummer. It's these people in London that the DLA are very reluctant to take on, 'cos they can't produce a more plausible witness of their own.

Secondly, although it seems double plus unfair, it is VERY common that if you have one principle problem, you stand a much better chance of having a whole basket of more minor, but equally disabling problems.

And just as a final thought, have you consulted the American DMS4 descriptions of your condition? These are quite comprehensive, and seem to cover almost everything. Although they appear simplistic, they guide you towards a diagnosis through a series of tick boxes - which is not a bad place to start.

I don't have the website for DMS4 criteria, but if you have a look round this section of the site, you'll almost always come across the name of Ted_Hutchinson. Having read many of Ted's postings, I don't think I've ever met anyone with a better understanding of the issues you face. Without wishing to add to his fantastic contribution to this section, I don't think he'd object to a personal message if you sent it to him.

Lastly, as far as benefits are concerned, you need to think about everyone who will support your case, and include their names on your application/appeal form. You also need to complete the form, always thinking of the worst case senario, in loads of detail. I'd suggest you fill in any form in the company of friends, as they will always point out when you are underestimating what you can do. You need to complete each box in minute detail, no matter how painful it is.

Don't forget, we are not talking about a few months benefit, but possibly many years, worth thousands of pounds.

And finally, just don't let the !!!!!! grind you down.........

billysnug

Thankyou so much nemo183 for your reply, when i just read it and got to the end it brought tears to my eyes. Its hard not to let them get you down when it seems no one listens and you dont get anywhere. I was so determined to put across to the neurologist today just how i feel etc and my position regarding DLA and wanting answers as to whats wrong with me but im really not any further forward and yet i am.
He doesnt want to give me tablets and send me away as that wouldnt help anyone (which i appreciate) but hes sure that its all to do with stress. Now a lot of people would probably say what a load of crap and that they blame stress etc for too many things, but im willing to listen as hes the doctor and i just want to be sorted out.
Anyway hes given me anti-depressents (which im not happy about) which he says if it is stress then they will help until i get an appointment come through to go to The Institute if Neurology in Queens Square London. He says this will take about 3 months and they are really good there and have lots of neurologists, phsychiatrists etc who should be able to help sort me out. Is this the sort of place you meant went you said about a London teaching hospital? So do you have any experience of these places?
I just dont understand how stress could do the things that happen to me. If i were to be all worked up and then collapse, go blank, stare etc then i could maybe understand it. When i am sitting relaxed or even just laying in bed and it happens that just doesnt add up to me.
Hes going to do me a letter just to say that hes sending me for further tests (although in the DLA report from him he put no further tests), i have asked him to put also how it affects my daily life as thats what they are interested in but we will have to see tomorrow when i go and pick it up.
The form filling where you say to put lots of detail, i think i have probably put too much detail. Even the disability lady said that when she looked through the form. I have a habit of running on a bit!! Its very difficult to fill the form in though as for example when it says about how far can you walk, i can not walk at all when i go like i do as im usually slouched on the chair or on the floor where id been standing. I thought you were supposed to fill the form at your worst state which i did but then they have put on their statement that i cant walk at all that they do not take that as being acceptable. You cant win!!
Anyway, thanks for your help and info i will let you know how i get on and also whats written in my letter tomorrow when i pick it up.
I also printed out a 4 page sheet last night to take with me today which asks about sitting, standing and various problems you have etc. You fill it in then the doctor fills in that he either agrees or disagrees and signs it but he wouldnt fill it in as he said it would take too long. So tomorrow i will see if i can get an appointment with my doctor and she can fill it in to help my claim. Although i already have a very good letter from her which hasnt helped.

crutches

good luck billy slug.
i hope you can feel happier soon.Perhaps you could mention to them that a diagnosis would probably reduce you stress??!.

billysnug

Yes i agree, a diagnosis would help very much.
Well i got my doctor to sign the form for me that the neurologist wouldnt, shes very helpful like that. She done the prescription for me and discussed which anti-depressents would be best as a few year back i was on the ones that the neuro gave me prescription for yesterday but i didnt have much luck with them they made me worse.
So she has given me Fluoxetine (commonly known as Prozac) which we both talked about my concerns and i said about 5HTP from health shop and she mentioned St Johns Wort but left the choice to me. So i now have a months worth and to see her again in a months time.
She agreed with the neurologist suggestion that if it was stress then the anti-depressents would help. Im about to pick up the neurologists letter shortly which im interested to see what he has written to help my DLA appeal case.
Just a case then of waiting for the appeal. If i lose that then i suppose its back to square one.

billysnug

Well i picked the letter up from the hospital which the neurologist had done for me and its very good. Its an A4size and almost full, covering what has happened in the past regarding tests etc, the fact that he has referred me to London and more importantly for the purpose of the appeal, how it all affects my day to day living. Will be getting copies done and get them sent off first thing in the morning recorded delivery as i know they must have them either 7 or 10 days before the appeal date.

nemo183

Hi Billy.

Glad you got the letter - it sounds useful.

The Institute if Neurology is indeed a top place (if not THE place) to be referred to - they also have links to places like The Maudsley, in South London - which is also stuffed full of top people.

I should point out that I am no doctor, but I have spent the last ten years making sure that my son, who has a complex collection of neurological problems, gets the best help available.

For what it's worth, the only doctors I feel are worth dealing with are those that you feel have a real understanding of your situation.

Over the years I've lost count of the number of consultants I've met (let alone doctors). The majority of these have been helpful, caring people. A smaller proportion have actually been able to help, and it's one of these people you need to find. I've also walked out of meetings where I felt there was no understanding or rapport about the problems my son was facing.

It is a sad but unfortunate fact that doctors are not always right, and sometimes do not always consider that their principal concern should be their patient. I've seen situations where a doctor is prepared to continue a course of treatment to it's conclusion, for research purposes, when they know they have made the wrong diagnosis - and when they are working within the same building as a consultant who can help, and is a world authority on the subject.

I'm not going on about this to suggest you develop a morbid distrust of doctors - although I am saying is that you should always question if they are helping you get better. You mentioned the use of anti-depressants in your email, and these can be very effective. However, if you try one for 3 months and it isn't working - ask to try another. If that doesn't help, try another.

Personally, after ten years of trying to get the best out of the health and education services, I've found myself needing to try anti-depressants, and although I've tried a shed load, they've all made me feel worse, not better.

The things I've found work for me are:

1) 30 mins exercise everyday (jog, fast walk, cycle ride, swimming etc - not gym work)
2) Meditation - dead easy - I personally find TM the best, but there are loads of others.
3) If you can find a good Cognitive Behavioural Therapist, they can be really useful.
4) Reading books to help move forward - one of the best I've found was designed originally for creative writers - it's called "The Artists Way", by Julia Cameron, to help people whose creativity was blocked.

There is an old saying -"If you do what you've always done, you'll get what you've always got" - and this should act as an incentive to try doing new things that might help you - you're worth more than settling for how you feel at the moment.

Finally, I'm not mentioning any of the above because I think any of it may help you - although, who knows? - but I mention it because you should not feel isolated by your problems - they are shared by many of us.

Very best of luck with the appeal, and I hope you get an appointment in London soon. Don't forget to let us all know how you get on.

And really finally, do try and make sure you have some help with form filling, etc. I know how hard it can be by yourself. If all else fails, and you need extra help and don't know anyone locally, how about approaching your local religious centre - of any denomination? I only mention this because they often have volunteers who are prepared to take the time and trouble to get involved.

Good luck!

billysnug

Hi! Nemo183,
Well im still up due to a wicked thunder storm which has been going on for about 2 hours or more (yes i probably shouldnt be connected to the internet but never mind!!).

When you say about meditation and TM you find the best what is TM? Hope i dont sound think! My mum and sisters do meditation as they are part of a spiritualist group who communicate with the other side etc. I have listened to a meditation cd once before and it made me very relaxed and sleepy.

Im always reading books, cant get enough of them, they help to keep my mind active and thinking. Always factual books though as i like to learn new things, like physchology books Sigmund Freud, behaviour, body language, anything to do with how the mind works.

You say about doctors not always being right well ive found that out myself in the past. Also within the last 6 weeks i had an appoinment with a women doctor a smear due to problems and when i see her she made me feel like i was wasting her time and shouldnt have been there. She wouldnt do the smear. So when i got out i went to the reception and asked for a smear and had a nurse do it. Anyway, due to the problems ive been having im now booked for surgery in just under 4 weeks time. I feel like going back and seeing her and telling her how it is.

If my appeal is not successful then the lady i have representing me (from the Disability Rights place) will fill any new forms in for me. Each time ive been to see her she has said about did i want to carry on or forget the appeal and she would fill all the new forms in for me. She seems to think that i have written too much information in the claim form. Where you get to fill in the blank space with anything else you feel they should know i have gone on to fill 3 A4 size sheets. I suppose thinking about it that is probably excessive but how i see it is that it must be better for them to know everything than just some. She has pre-warned me that at the appeal to just answer simply to the questions they will ask me. I dont know what other peoples experience of these appeals are but she has also told me that they do try and catch you out. I am really not looking forward to it at all and will be glad when it is over, which will then leave me just a couple of weeks before my surgery.

Thanks
P.S. Only just realised that the other replies are at the bottom of the screen if i scroll down. Ive been making notes so i know what to answer to as i never realised that!!

BenefitMaster

First rule - tell them what they ask, and ONLY what they ask. If you give them more, then they have grounds to use it against you.

Second rule - fill in the form as if it is your WORST day for your condition, even if that only happens once a week/month/year/lifetime

Third rule - claim early, claim often, appeal loudly. I cannot emphasise the importance of making your appeal as heavyweight as possible, with doctors, Social Workers, Midwives, partner, MP, specialist etc supporting your claim. If you claim alone, you could be screwing the system - if you have the support of your local network, it's unlikely you are lying.