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  1. #1
    notnamedbill
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    Help with face to face part!

    Hi all, I’ve got my face to face in 2 weeks and I am looking for some tips on how to present myself.

    I do however have a problem and that is defining if I have a disability myself and perhaps if others say what they feel then I can rationalise it out.

    I have a rare condition called Small Vessel Disease, well rare for a male, there is reportedly about 6 of us in the UK and it as no cure. They (doc’s) cannot actually see or know what’s happening, just that I have it! All they can say is that it could either/and or/be spasms, blockages and or just not working of my smallest microvascular system. It is presenting as Coronary Microvascular and Raynaud’s but it also as an effect on other organs including the brain and early dementia is a real possibility.

    The secondary Raynaud’s is ongoing and even on a warm day any part of my body can go white and cold as the blood flow stops, it starts again and I warm up. The same happens to my heart and I am treated as having a heart attack every month and kept in EAU over night (yes over the last 14 months I have been in hospital overnight 14 times)

    All they can do is keep changing the medication and at present I am on 12 different drugs – basically if I don’t take them ……. Well, enough said.

    Here’s my problem: I have been working on a 4 to 6 cycle, starting week 1 and progressing to week 4, 5 or 6 (from being slow to not moving far) or to put it another way, when using the point system; day 1, I am near normal but slow and I recon a point score of 4, last day my score is high twenties.

    In my own mind I do not know or I cannot come to terms with ‘I am disabled’ I’ve read on here and in the official blurb and it is, or seems to me biased towards ‘visual’ physical disabilities or it could just be me being unsure.


    PS surgery is at present out of the question, it would be like putting condoms on thousands of ants willies?

  2. #2
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    Quote Originally Posted by notnamedbill View Post
    Hi all, I’ve got my face to face in 2 weeks and I am looking for some tips on how to present myself.

    I do however have a problem and that is defining if I have a disability myself and perhaps if others say what they feel then I can rationalise it out.

    I have a rare condition called Small Vessel Disease, well rare for a male, there is reportedly about 6 of us in the UK and it as no cure. They (doc’s) cannot actually see or know what’s happening, just that I have it! All they can say is that it could either/and or/be spasms, blockages and or just not working of my smallest microvascular system. It is presenting as Coronary Microvascular and Raynaud’s but it also as an effect on other organs including the brain and early dementia is a real possibility.

    The secondary Raynaud’s is ongoing and even on a warm day any part of my body can go white and cold as the blood flow stops, it starts again and I warm up. The same happens to my heart and I am treated as having a heart attack every month and kept in EAU over night (yes over the last 14 months I have been in hospital overnight 14 times)

    All they can do is keep changing the medication and at present I am on 12 different drugs – basically if I don’t take them ……. Well, enough said.

    Here’s my problem: I have been working on a 4 to 6 cycle, starting week 1 and progressing to week 4, 5 or 6 (from being slow to not moving far) or to put it another way, when using the point system; day 1, I am near normal but slow and I recon a point score of 4, last day my score is high twenties.

    In my own mind I do not know or I cannot come to terms with ‘I am disabled’ I’ve read on here and in the official blurb and it is, or seems to me biased towards ‘visual’ physical disabilities or it could just be me being unsure.


    PS surgery is at present out of the question, it would be like putting condoms on thousands of ants willies?
    If you are attending a face to face assessment following filling in an ESA form, then first make sure someone goes with you. For moral support and to take notes. Is that what your face to face is for?

    Focus on how your symptoms affect your day to day life. Don't downplay anything. Familiarise yourself with what you've put in the form, so that everything is fresh in your mind.

    The bit in your post I've highlighted - I don't understand what you are talking about regarding a cycle or point system. Can you explain?

  3. #3
    notnamedbill
    Guest
    Hi Rich, thanks for coming back, i'll try to explain

    My condition works on a cycle of about 4 to 6 weeks:

    Week 1 I am basically 'normal' but very slow, I can cut the lawn but it takes all day. I cannot do a weekly shop at a supermarket but I can pop in for one or two items, If I move too quickly I get dizzy and palpitations, and have variant angina 80% of the time up to a 3 or 4/10 level.

    Increasing in severity to week 4 when I almost find it impossible to get out of bed or move from the chair. At it's peak I start to have a heart attack but before 'too' much damage is done my small vessels release. I have variant angina 100% of the time up to level 9 or 10/10 (at which point I black out). The cycle then starts again: Week 1 I am basically ...............

    I read on here about the point system that is used to measure disability for the purpose of PIP and followed the link to the page. I did it at day 1 and then for day 30 and it came out as 4 for my 'good days' and 27 for my bad ones.

    I have tried to be a brief as possible, next comes unemployment, I haven't worked for three years and because my wife earns I don't get a penny- makes you wonder how I afford the medicines (£10.40/month, prepay, we couldn't afford it if we had to pay for 12 every two months)

  4. #4
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    Thanks for that, I understand. What is your face to face for? Is for an ESA application you've made or for a PIP application?

  5. #5
    notnamedbill
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    It's for PIP

    I failed miserably for a blue badge with the assessor even telling me to use at least one stick or I would never get it but two is better! Now I know why I see sticks over peoples arms while they run for the bus (there is plenty of these in the Walsall area).

    My 'self worth' stops me going down that route. But I suppose that's why I asked for tips

  6. #6
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    I'm afraid I can't give you much advice on this. I've yet to be PIP'd as I still get DLA.

    All I can suggest, as I said, don't downplay any of your symptoms or put a 'face' on it. It is really important to get across to them just how you are affected by your conditions. I know this is difficult to do and doesn't make anyone feel great about themselves but remember if you don't tell them, they won't know. BTW I am not suggesting that you make anything up - just that you are honest about how you are affected.

    Good luck, I'm sure if there is anyone else on the board who has been through the PIP assessment will give you some advice.

  7. #7
    Senior Member sea queen's Avatar
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    I thought it needed to be put down on your worst days?
    Sea Queen

  8. #8
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    Quote Originally Posted by sea queen View Post
    I thought it needed to be put down on your worst days?
    No SQ. Anyone with a variable condtion who only fills out their form based on their worst days can end up with an overpayment or interview under question if someone reports them, and the DWP film them on a good day. Have read of a few cases like this on forums, and not all of them end well for the individual.

    If someone's condition varies they need to give the details eg on a good day I can do this, but on a bad day I can do this, and then tell them how many days are good or bad etc. It's the only way to protect yourself from possibly landing up in hot water at some point, because you've fully disclosed the variation.

  9. #9
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    Quote Originally Posted by seriouslyfedup View Post
    No SQ. Anyone with a variable condtion who only fills out their form based on their worst days can end up with an overpayment or interview under question if someone reports them, and the DWP film them on a good day. Have read of a few cases like this on forums, and not all of them end well for the individual.

    If someone's condition varies they need to give the details eg on a good day I can do this, but on a bad day I can do this, and then tell them how many days are good or bad etc. It's the only way to protect yourself from possibly landing up in hot water at some point, because you've fully disclosed the variation.
    My understanding of the focusing on the 'bad' days was that applicants are inclined to downplay the effect their conditions had on them, therefore not giving a full picture of their disability. Remember, it is on the 'bad' days that people may need more help and support than on 'good' days.
    It's a tricky one.

  10. #10
    notnamedbill
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    My gist from reading about this is that it goes on the majority (projected to 12 months). But isn't that subjective and a day either way could effect the out come?

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