When to reapply?

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hossylass

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Re: When to reapply?

  • on: 27 Apr 2012 10:57PM
I'm approaching 9 years without the correct dx for what most people would judge as my main disabling condition.

Luckily the lesser conditions are really well documented, and provide enough proof, but I have been challenged about my abilities even with this proof.
You probably know how many times I have thrown my hands up in despair and walked away from the NHS.

Its difficult - I would say try private, but not sure that it wont be a big hole to pour money into for you.
Its one thing being really certain about your condition and going private to get a faster dx - its quite another when the consultants you speak to are all so sodding vague.

If you add up the vague stuff that has been suggested for you, and the lack of motivation for them to follow it up, its a depressing prediction when I say I think you could be in it for a good few years yet before they get to the bottom of it.


devine63

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Re: When to reapply?

  • on: 28 Apr 2012 12:23AM
Hi Sofie

you said that one of the doctors had confirmed you have hydrocephalus ("water on the brain") and mild spina bifida (they tend to occur together) and  I think in another post you mentioned having an enlarged ventricle (which means that one of the spaces, which should be present in the brain, is larger than normal - so essentially some brain tissue is missing, leaving extra space for the additional fluid).    Given that is the case - all of the problems you describe COULD be caused by the hydrocephalus itself - so you do have a diagnosis (the doctors might be exploring other possible explanations as well, but DWP don't need to worry about that).  Plus I think you said you have Nystagmus, which is another diagnosis.

As I was explaining to Seegee in another thread, in circumstances where one has memory problems, language problems, reading problems, etc these are all cognitive skills - and a detailed psychometric assessment by a Chartered Neuropsychologist could possibly provide you with a detailed statement of your cognitive skills - it shows both strengths and weaknesses - and the report can be useful as hard evidence of what your difficulties are.  Many times I have had someone come back from such an assessment and say "he was able to explain to me why I struggle to ...."

So this assessment is something the Work Programme could pay for for you.

You also mentioned other equipment and stuff you need, if that is stuff you need for work, the Work Programme might be able to pay for that too....

regards, Deb




Sofie

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Re: When to reapply?

  • on: 28 Apr 2012 10:11AM
What do you write if you don't have a diagnosis?

lankou

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Re: When to reapply?

  • on: 28 Apr 2012 10:34AM
What do you write if you don't have a diagnosis?

"Large medical file, diagnosis will probably be determined at post mortem."

Sofie

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Re: When to reapply?

  • on: 28 Apr 2012 10:37AM
What do you write if you don't have a diagnosis?

"Large medical file, diagnosis will probably be determined at post mortem."

 >lol< Sadly, I think you may be right. :-(

devine63

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Re: When to reapply?

  • on: 28 Apr 2012 11:29AM
Hi Sofie
I suggest that you write that your diagnoses SO FAR include:
hydrocephalus, spina bifida and enlargement of one ventricle in the brain (with associated loss of brain tissue) plus nystagmus (and I think you mentioned a neck injury?) and the consequences of all of these things are a wide range of symptoms which include
epileptic seizures
various cognitive impairments (problems with memory, language, reading, etc.)
visual impairment including problems with night vision, (and add the other visual issues)
problems with balance
....  [and add the rest]
Then at the end say that your doctors are currently still investigating your symptoms and that you expect further diagnoses to be added to the list in the near future. 

Then of course you need to go on and describe the impact of all these symptoms on your everyday life.
regards, Deb

Sofie

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Re: When to reapply?

  • on: 28 Apr 2012 11:40AM
Thank you. With regards to the epilepsy, I had it as a child and no-one can say if I've still got it. Because it's nocturnal, only once has it ever been witnessed.

devine63

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Re: When to reapply?

  • on: 28 Apr 2012 04:12PM
Hi Sofie

in general terms, epilepsy is a disease doctors can recognise and they have some moderately effective treatments for it, but they don't know how to cure it.  Therefore the likelihood is that you still have epilepsy, even if no one else has witnessed any recent seizures .  Therefore I would say it is reasonable to include it in the list of conditions which you experience.
regards, Deb

hossylass

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Re: When to reapply?

  • on: 28 Apr 2012 04:49PM
I'd also suggest that you only list them if you have written evidence that these conditions are diagnosed and not suspicions.

The diagnosis whould be listed in your medical notes.

KizzyKazaer

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Re: When to reapply?

  • on: 28 Apr 2012 05:09PM
Sorry, I am going to sound a bit contradictory to Hossy's post here, but from my own DLA experience...

Regarding diagnosis - on my form where it asks for 'Name of illness, disability or diagnoses', I listed different labels I'd had from three different psychiatrists back in the 1980s, plus two conditions that were definitely on my records over the years  and ending with the current psychiatric input that suggested I had 'elements' of such and such.  (This was before the psychotic episodes of the last four years as well, and I still had a satisfactory result.)  I even finished off with 'You're confused?  So am I - never did fit the tick-boxes' >lol<

From that, my feeling is:  so long as you can slip in a label or two that is on your medical records, the 'suspected' could still be relevant if you are experiencing symptoms that would be common to that diagnoses and those symptoms are meaning that you need help with care and mobility....Remember, DLA decision-making is a very inexact science  >erm<

Sofie

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Re: When to reapply?

  • on: 28 Apr 2012 06:22PM
I'd also suggest that you only list them if you have written evidence that these conditions are diagnosed and not suspicions.

The diagnosis whould be listed in your medical notes.

This is going to cause me major problems. Whilst the hydrocepahlus, spina bifida and Autism (not sure what type yet) are suspected, I have no actual written diagnosis. In fact, my GP said the letter from the hospital says something like "saw Sofie today. Her MRI scan shows excess fluid". It probably goes on to state the discussion he had with my mum regarding the balance problems, the issue several years ago with the pionidal sinus and being fobbed off by doctors who claimed that everything (including the vomiting at night) is eyesight related.

I know from a previous letter sent to me, they said that my MRI scan does show some form of abnormality; but they can't work out what.

I'll make an appointment with my GP and see what they suggest. I know when DLA came up before, she said she will support my claim and that in general, a GP doesn't know their patients care and /or mobility needs. (there's nothing that can be done with my eyesight - I just get yearly check ups from the eye infirmary)

devine63

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Re: When to reapply?

  • on: 28 Apr 2012 06:47PM
Hi Sofie

Ok so the hydrocephalus (excess fluid) is confirmed by the neurologist's letter and the rest are suspicions.  Luckily for you (in this context) hydrocephalus increases the pressure on the brain tissue and therefore it can cause practically ANY cognitive symptoms - so the hydrocephalus alone could be causing any of the difficulties you have.   So you should be able to say something like - the brain scan is abnormal, doctors are still trying to work out what their diagnosis is, but it does show that I have excess fluid on my brain (hydrocephalus).  The damage has various effects including:
[list all the things I said earlier plus any more you can think of which apply]

It's about how you present the information - if the decision maker looks up hydrocephalus in their textbook, they will find it can cause a wide variety of symptoms - therefore the other diagnoses are not essential, they are important to you and the docs, but what you already have should be enough to satisfy DWP - especailly as they are supposed to concentrate on EFFECTS on everyday life,  not labels].
regards, Deb

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Sofie

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Re: When to reapply?

  • on: 11 May 2012 10:57AM
I now have my diagnosis of Autism. The letter I'm due to be sent should back up my claim that I have communication issues. 4 years ago, DWP accepted that my sight loss causes communication issues. They decided in December it doesn't. My sight loss was worse in my most recent application than it was in 2008 and I have 2 more diagnoses relating to my sight since the original application.