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Thread: To inform or not inform?

  1. #1
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    To inform or not inform?

    Dear All, Thank you for responses received on earlier threads.

    However, further guidance needed! In an attempt to be pro active and writing to persons/teams of the medical profession who have/had dealings with your illnesses and disabilities, whilst writing to them asking for confirmatory information, is it advisable to let those you are writing to the reason why you need such information? Or should I leave it to DWP to gather necessary additional information they may require?

    In that, ‘I write to ask for confirmation of my conditions …and that this is for the benefit of Department of Work and Pensions/Jobcentreplus/ATOS’.

    I will be incuding a paragraph letting the persons know to who i am writing that the information asked for is not for any legal actions of proceedings against them.

    Please advise.

    Many thanks as always,

    Spencer69

  2. #2
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    I'd say yes, it would be advisable to let them know why you are requesting such information.

    Don't rely on the DWP to provide all the information that YOU require, it is in your best interests, not theirs.
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  3. #3
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    Hi paul, Thank you. My final paragraphs in such a request to my consultant would consist of something akin to:

    'I will of course be liable for any reasonable fee payable for your response, and finally confirm that such content is not for any form of legal proceedings against, yourself, members of your team, or indeed, any persons connected whether directly or indireclty with Christies hospital.

    Finally, I apologise for the length of this request, but this is in an attempt of being pro-active in order to clarify and confirm those parts of my illnesses and disabilities, how they impact on my life and that of my partner/carer Cathy, and to relieve any otherwise potential stress which only seeks to exacerbate and deteriorate my health further. This may also be for the benefit of ATOS, by whom I may be called for a medical but which may not be conducted by a specifically qualified person.'

    Unless you would edit it in any way?

    spencer69

  4. #4
    Senior Member Stepheninleeds's Avatar
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    First, we are al glad to help anyway we can. Second, yes, you should say why, it makes it easier for them to understand why you are making such a request. Third, do not say it is not for any legal prodeedings proceedings or the such. This will get them wondering then, not a good idea. You have given your reasons, that is enough. Fourth, the last part is a little involved. I am not sure how to shorten it, but needs saying in one sentence. In fact, all you need to say is that you are requesting this as part of your claim or appeal for DLA, nothing more than that. You can even include it in the paragraph requesting such information.
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  5. #5
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    Just a word of warning - consultants reports can be quite expensive, particularly if you want a full opinion on the limitations you have in day to day living/mobility.
    The consultant should of course advise you of their fee before doing anything, but even then it is likely they will only be able to provide a general opinion on how the condition would usually affect people. For the individual report you need they might want you to have a private consultation first.
    I would phone first and discuss what you need with the secretary.

  6. #6
    Senior Member Stepheninleeds's Avatar
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    DLA will always contact such consultants anyway, if they feel the claim requires it. Your GP also has reports from all your medical history. Contacting everyone is very time consuming & can be expensive, for what the DLA will usually do if required to confirm or understand your situation. If they fail to do this, then is the time to consider contacting these people.
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  7. #7
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    Hi, Maybe I should have clarified that this is not for DLA purpose (already assessed and history of DLA is-circa 2000-2008-DLA Low Care Rate awarded (firstly for period of 2 years then on renewal, indefinately). Circa 2008-DLA re-assessment asked for. DLA Low Care Rate increased to High Rate Mobility and Middle Rate Care, indefinitely).

    The reason for this is to obtain as much documentary evidence to assist in migration from IB to ESA, once ESA50 lands on doormat (which I have been told should be in about 2 weeks time, now that I have made the telephone call to them when they explained the migration route and what happens…think others have said seems like DWP reading from script…certainly sounded like it, but pleasant enough).

    Also explained in this call that had to dealt with on loudspeaker, that although they now have contact phone number that unless it is my partner/carer who answers, as I have major problems with my hands and manual dexterity (see below), that I would prefer to have all matters dealt with by way of letter. They explained that they have noted this on the system and that if unable to be reached by phone then letters would always be sent as a follow up procedure.

    Problem with hands (and feet, which only covers part of my serious, complex health issues, illnesses and disabilities…not my words either!) as well as chronic severe atopic eczema (although affecting the whole of my body, for this particular explanation) is the additional side effect of Chemotherapy Induced Peripheral Neuropathy (C.I.P.N.) caused by the aggressive intravenous chemotherapy I received over a period of 9 months, as part of treatment for Non Hodgkins Lymphoma.

    The C.I.P.N. has been with me since that treatment on 2000 (which was subsequently followed by 3 (additional years) of chronic and life-threatening alcohol abuse, which also compounded and exacerbated C.I.P.N.). I still have annual appointments and checks and, at these attendances it has been confirmed to my partner and I, that my condition of C.I.P.N. having suffered from the outset and my alcohol abuse over the following 3 years, that C.I.P.N. is in all likelihood as far as I am concerned a ‘lifelong condition’.

    Just out of interest, throughout my appointments last year, now over a decade since my diagnosis and treatment for NHL, is a further late effect of chemotherapy received is that ‘Avascular Necrosis’ has been found in both hips. Left worse than right, and these recent findings are in addition to problems I already suffer with my lower lumbar. (I have scan results of both these problems).

    Anyway, although a long way around of explaining why I wish to obtain as much documentary evidence as possible, but there you have it. These are not the total of my illnesses/disabilities.

    A final reason is that I am trying to reduce as much stress as is possible throughout my migration as stress, in any form, is an absolute catalyst for my already chronic severe skin condition, which in itself leaves me prone to secondary infections, especially Impetigo which I suffered with on 6 separate occasions last year.

    Enough for now me thinks. Again, many thanks for responses to date and those yet to come.

    spencer69.

  8. #8
    Senior Member Stepheninleeds's Avatar
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    Sorry, my mistake. So many people fighting so many things. In that case, you need all the proof you can get, & a magic wand!
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  9. #9
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    spencer69 If its any help I too suffer from Avascular Necrosis though only on one hip ( along with other problems) but the hip situation alone is enough to qualify for the support group according to my GP.
    Try not to get too stressed remember we only tend to hear about the 'horror' stories about the migration from IB to ESA & a lot of hot-air from incompetent politicians and sensational headlines.

  10. #10
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    Hi Tinker and others who have replied,

    I appreciate your information regarding avascular necrosis (AVN/Osteonecrosis) of the 1 hip (and your other conditions) and that this alone will not fit criteria for support group. Also for telling me not to get too stressed! Indeed, this has been the 1st time online since last post due to ‘stress induced aggravated itching’ and the injuries I have caused to myself. My partner made me promise to try and not think of this until needed (migration). Don’t really have any choice in the matter anyway, for without my partner, no chance of posting anything!

    The questionnaire has now landed a week earlier than I thought and yes, stress, panic and anxiety not easy to control, but my partner knows how to handle me when like this. Just to update and add that I have AVN in my right hip and ‘sclerosis of the right hip’, so my right hip is going the same way. Have recently been referred and 1 appointment had with consultant orthopaedic surgeon, who also says I am a prime candidate for arthritis.

    Back to the main point, as well as above hips problems which causes an intense burning sensation resulting in extreme pain and severe discomfort which can be brought on within 5 – 10 metres of restrictive ‘mobilisation’, I also suffer from lumbosacral damage namely, spinal curvature to the left, loss of disc height, disc degeneration, broad based disc bulges and facet joint degeneration at 3 lower levels of the lumbar. It is through this lumbar problem that I asked for my then DLA award of low care rate (only) to be looked at again when I was awarded high rate mobility and middle rate care indefinitely. My mobility award confirms that I am virtually unable to walk 50 metres, slowly. How this affects the criteria for the support group I do not yet know as have not been able to bring myself to start answering esa50.

    (For the sake of completeness, my other illnesses surround, Chemotherapy Induced Peripheral Neuropathy (which causes problems with my hands and feet, mainly suffering from cramps, lack of grip strength, pins and needles and burning and freezing sensations, which on its own can be very painful, so how I would be expected to self propel myself in this imaginary wheelchair, or of what I have read of it, if it is meant to be true, I do not know. It is was also because of this I was originally awarded low care rate), Chronic Severe Atopic Eczema (covering the whole of my body which needs twice daily skin preparations being applied all over), Serious liver damage meaning 2/3rd is scarred and defunct and Severe Depression. There are additional health problems as a result of those mentioned here.)

    I have spoken briefly with a benefits advisor who recommended I leave asking for medical confirmation of one of my conditions, until such time if it is required, as she felt that I my be panicking and stressing myself out unnecessarily. However, she completely understands how this process makes people like ourselves and that it really is a disgrace.

    Unfortunately, although assuring to hear, does not guarantee!

    So, for the moment, trying to keep as least stressed as possible which is the biggest catalyst and enemy of my severe eczema and wishing all a quiet serene weekend…

    Spencer69

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