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Very concerned

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Comments

  • CPwarrior40
    CPwarrior40 Community member Posts: 8 Connected
    Well done (in a positive non patronising way)
     But Can I please ask that you contact your GP and ask for a ring back 
     you may want to ask to "up" your meds so that you can at least go out
     best wishes,
  • Topkitten
    Topkitten Community member Posts: 1,285 Pioneering
    @CPwarrior40, actually I don't think it is good. I don't seem to feel anything.I don't find things happy or sad or anything else for that matter. Not sure this will have a good outcome.

    As for the meds.... I have argued sensibly and logically, got angry and gone into panic attacks trying to get my regular doctor to up the meds since December and he has steadfastly refused. I had a home visit and a phone call with two other doctors, both appeared to agree to it and then did nothing. I have talked to reception people and the prescription team and got nowhere except more panic attacks. I even complained to NHS England about it and got nowhere. I can't think of anything else to try. My regular doctor wanted the Pain Clinic to up it and referred me. However, they won't treat me unless I attend a seminar first and currently the pain has me officially "Housebound", so the Pain Clinic discharged me. I guess I just have to live with ever increasing pain now that the doctor has to shoulder the burden alone. Who cares anyway, certainly not my GP or Surgery, that's for sure.

    And now it seems I have a new problem. The neural pain in my right leg is due to damaged nerves (been damaged for 12 years and are now permanently damaged, nerves don't regenerate or heal) and Tramadol doesn't touch it significantly, also I have had almost no feeling in my right toes for 2 years. Now, for the second time, the pain in the shin has gone from it's usual red hot burning sensation to white hot. My right foot usually only hurts when I wear socks and / or shoes but now that is white hot too and my right toes hurt as well. Oddly though the pain IS responding to Tramadol, so it isn't neural pain. Last time I contacted the 111 service and they insisted on sending an ambulance who, as usual, could not help. I wouldn't go to A&E because by the time they arrived (8 hours after I called) the pain had subsided and also because hospital transport is reserved for cancer patients only. I can't use taxi's due to agoraphobia and I have no other way to get home. The ambulance crew insisted on ringing a doctor who wanted to speak to me then she did everything she could to wriggle out of attending and ignored me when I said it was a new problem. She didn't attend and the ambulance crew were more than a little stunned when she refused. So.... I am now at the daily limit for Tramadol in in only 8 hours and will likely have to take more every 2 hours until it subsides.

    The most likely problem with the leg is circulation issues or a clot but I don't seem to care about that either. Feels so weird not caring about anything.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • CPwarrior40
    CPwarrior40 Community member Posts: 8 Connected
    wow, any chance of a change of surgery
     sounds like my anxiety (possibly OCD) at times and my pain management of Cerebral Palsy is different to you and your situation
     good luck! & best wishes
  • Gaina
    Gaina Community member Posts: 133 Pioneering
    Topkitten said:
    Ty @poppy123456, I will have a look through those but don't feel up ro it right at this moment. Having slept a lot over the weekend I have been awake all night and now feel horrible but not tired yet. I appreciate the reply though just starting to panic about getting the surgery to support me. The calls I need to make and arguments it will lead to.

    TK
    ((HUG)) I know how you feel TK I was beside myself with anxiety the closer I got to the f2f as well.  In the end the assessor turned out to be very good, and made me feel at ease when I explained what I have difficulty with.  I hope that reassures you. :)

    When I filled in the part about preparing food, I had the same confusion as you.

    To Question 3a 'Do you need to use and aid or appliance to prepare a meal?' I answered NO, but wrote 'SEE Q3C' next to the box (3c is where you can write further details).


    To Question 3b 'Do you need help from another person to prepare or cook a simple meal?' I ticked YES, and again wrote 'SEE QUESTION 3c'.

    In 3c I explained that someone else prepares all my meals for me as I am unable to handle hot and heavy items safely and reliably due to my disability.

    I hope that helps. :)

  • debbiedo49
    debbiedo49 Community member Posts: 2,904 Disability Gamechanger
    At my f2f assessment I was asked did I use lightweight pots or adapted utensils for cooking? In response to the above about heavy pots etc. I said no as I didn’t feel safe in the kitchen cooking. I didn’t get enough points for that. They may ask you same question in different ways. 
  • Gaina
    Gaina Community member Posts: 133 Pioneering
    edited June 2018
    At my f2f assessment I was asked did I use lightweight pots or adapted utensils for cooking? In response to the above about heavy pots etc. I said no as I didn’t feel safe in the kitchen cooking. I didn’t get enough points for that. They may ask you same question in different ways. 
    I was just asked if I could chop vegetables. I said I couldn't because our kitchen counters are too high for me to work at. Fortunately my assesment took place at a GP surgery and there was a cabinet in the room the same height as our kitchen counters so it was easy to give her a visual example.

    She actually said at the end of the assesment that she didn't understand why people in my position - who's condition will never improve - are even being hauled in for assesment!
  • Gaina
    Gaina Community member Posts: 133 Pioneering
    At my f2f assessment I was asked did I use lightweight pots or adapted utensils for cooking? In response to the above about heavy pots etc. I said no as I didn’t feel safe in the kitchen cooking. I didn’t get enough points for that. They may ask you same question in different ways. 
    I was just asked if I was able to chop vegetables.  I said I wasn't because our kitchen isn't adapted.  Fortunately the assessment took place at a GP's surgery and there was a cabinet in the room the same height as our kitchen counter so I was able to demonstrate why it was impossible.

    At the end of the assessment she even said she couldn't understand why people like me with conditions that will not improve were even being called in for assesment!
  • Yadnad
    Yadnad Posts: 2,856 Disability Gamechanger
    Gaina said:

    At the end of the assessment she even said she couldn't understand why people like me with conditions that will not improve were even being called in for assesment!
    The central policy for PIP is regular re-assessments.
    However there does seem to be some movement in this with the DWP agreeing that some people with lifelong conditions that will never change will be re-assessed every 10 years.The devil will be in the detail as to which conditions it will apply to.
    In the meantime 3/5 year awards irrespective will still continue to be given. 
    I don't propose to list all of my ailments suffice it to say that the majority of people would say that they are all lifelong and life limiting. Since 2013 I have had two three year awards which were reviewed after 2 years. 

    Given that I don't believe for one minute that the DWP will go against the above policy to a larger degree and consequently at age 70 I gave up after re-assessment number 3. Too much stress involved in having to fight every DWP decision.

  • Gaina
    Gaina Community member Posts: 133 Pioneering
    Yadnad said:
    Gaina said:

    At the end of the assessment she even said she couldn't understand why people like me with conditions that will not improve were even being called in for assesment!
    The central policy for PIP is regular re-assessments.
    However there does seem to be some movement in this with the DWP agreeing that some people with lifelong conditions that will never change will be re-assessed every 10 years.The devil will be in the detail as to which conditions it will apply to.
    In the meantime 3/5 year awards irrespective will still continue to be given. 
    I don't propose to list all of my ailments suffice it to say that the majority of people would say that they are all lifelong and life limiting. Since 2013 I have had two three year awards which were reviewed after 2 years. 

    Given that I don't believe for one minute that the DWP will go against the above policy to a larger degree and consequently at age 70 I gave up after re-assessment number 3. Too much stress involved in having to fight every DWP decision.



    I'm convinced the swines make the whole process as convoluted as possible to deter people launching appeals to decisions in particular.
  • poppy123456
    poppy123456 Community member Posts: 53,338 Disability Gamechanger
    Yadnad said:

    In the meantime 3/5 year awards irrespective will still continue to be given.

    Some people are unfortunate to have even less of an award than that with 2 years and review after just 1 year.
    I would appreciate it if members wouldn't tag me please. I have all notifcations turned off and wouldn't want a member thinking i'm being rude by not replying.
    If i see a question that i know the answer to i will try my best to help.
  • Gaina
    Gaina Community member Posts: 133 Pioneering
    Hopefully the advice to write stuff down as though every day is your worst day has been disregarded. Must say I read the OP post and thought it had been over complicated. It’s really simple in the sense that if you can do so,etching but can’t do it reliably, safely, repeatedly or in a reasonable time... then you can’t do it.

    One other point falls out of this which the OP post highlights. More than one activity under a descriptor can apply. So, if you can’t reliably do daily living 1b but only 30% of the time and yet 1e applies 25% of the time you can add them up so they go over 50%.


    That's interesting, i was under the impression that only ONE descriptor in any section could apply.
  • Waylay
    Waylay Community member, Scope Member Posts: 973 Pioneering
    @Gaina @Username_removed is correct. Multiple descriptors can count, so long as they add up to 50%
  • poppy123456
    poppy123456 Community member Posts: 53,338 Disability Gamechanger
    You can't score points for more than 1 descriptor, so i'm confused by this.
    I would appreciate it if members wouldn't tag me please. I have all notifcations turned off and wouldn't want a member thinking i'm being rude by not replying.
    If i see a question that i know the answer to i will try my best to help.
  • Gaina
    Gaina Community member Posts: 133 Pioneering
    Waylay said:
    @Gaina @Username_removed is correct. Multiple descriptors can count, so long as they add up to 50%

    I must have had an outdated version of the notes for assesors. They change the criteria so fast! I'm sure it's to make sure we can't get our heads round it. ?
  • susan48
    susan48 Community member Posts: 2,221 Disability Gamechanger
    edited June 2018
    You can't score points for more than 1 descriptor, so i'm confused by this.
    I thought that too 

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