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ankolysing spondylitis

hi im just wondering if anyone on here has the same condition as me and has had the PIP interview? mine is Friday, and after looking at what type of questions I will be asked, I do feel I wont be able to describe fully what this condition is like. I think the questions are too general and not giving the person a chance to describe fully what it prevents or slows down the lifestyle of the patient as I feel I have had this condition now for over 30 years , I do not know any other way to live without been in pain, to me it is just the norm now and the same with my way of life. anybody else feel the same?

Replies

  • catchacold2catchacold2 Posts: 19Member Connected
    Hi this post could have been written by me.
    I have high rate pip x2 and support ESA although my journey has been long I got there in the end.
    I have all 5 lumbar discs degenerated and have and still experience the results of that.
    This has gone onto now to cause claudication of both legs ( this was the reason I was then taken seriously)
    Up to then I was classed as having a back ache.
    My journey involved undergoing all available conservative treatments ( they like to see this although as I thought at the time this was little or no help to me. In fact the constant to and fro from hospital and various manipulations (that were preformed before I had an MRI. ( Seems the physio was not there to help but a barrier to delay having an MRI
    (MRI RESULT WAS MY PASSPORT TO SEE A CONSULTANT) AFTER ALL THIS NOTHING WAS EVER TO BE DONE THAT WAS GOING TO HELP but I had ticked all the required boxes
    4yrs later they accepted my disabilities.
    It could be argued that the system delayed my treatment and as a result the window for surgery was missed as my condition by then became inoperable. Knowing what I know now that was never a bad thing.
    Get across how your condition affects you on a daily basis. Back this up with GP letter of support. Explain everything in detail and leave nothing open to misinterpretation otherwise the assessor will (and is trained and allowed to) input their own interpretation of events as they see them on the day.
    Best wishes

  • MatildaMatilda Posts: 2,616Member Disability Gamechanger
    edited January 2017
    Hi @suzieboozie - PIP is not about the conditions you have but how they affect your ability to carry out a range of essential daily tasks and your ability to walk outdoors.  The assessor will ask you in some detail about all of these.   And 50% (at least four a week) must be bad days when you have great difficulty carrying out these tasks and walking outdoors.  

    It's a good idea to keep answers as simple as possible without excluding any essential details.  Assessors are not very highly trained medics (mine was a paramedic) so probably will understand little, if anything, about your condition itself.  @catchacold2 is right: focus on getting across the difficulties you have in doing the tasks the DWP have identified and your difficulties walking outside.

    The assessor will also observe you informally and ask you questions that indicate ability to carry out tasks.  For example, they'll observe you walking from the waiting area to the interview room, watch if you put any belongings down on the floor and pick them up later, watch how easily you are able to take a coat off and put it on.  And they'll ask if you have any hobbies - for example knitting or doing jigsaws would indicate a high level of manual dexterity.  They might also ask if you do housework which would indicate considerable strength and stamina.  And if you have any pets which would indicate a certain recurrent ability to be active in order to look after them.

    It's the indirect assessing that you have to watch out for as much as the direct!

    This link is the DWP's guide to assessors about how to informally observe interviewees and how to indirectly ask about the extent to which they are active.

    https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/547146/pip-assessment-guide.pdf
  • suziebooziesuzieboozie Posts: 2Member Listener
    Hi this post could have been written by me.
    I have high rate pip x2 and support ESA although my journey has been long I got there in the end.
    I have all 5 lumbar discs degenerated and have and still experience the results of that.
    This has gone onto now to cause claudication of both legs ( this was the reason I was then taken seriously)
    Up to then I was classed as having a back ache.
    My journey involved undergoing all available conservative treatments ( they like to see this although as I thought at the time this was little or no help to me. In fact the constant to and fro from hospital and various manipulations (that were preformed before I had an MRI. ( Seems the physio was not there to help but a barrier to delay having an MRI
    (MRI RESULT WAS MY PASSPORT TO SEE A CONSULTANT) AFTER ALL THIS NOTHING WAS EVER TO BE DONE THAT WAS GOING TO HELP but I had ticked all the required boxes
    4yrs later they accepted my disabilities.
    It could be argued that the system delayed my treatment and as a result the window for surgery was missed as my condition by then became inoperable. Knowing what I know now that was never a bad thing.
    Get across how your condition affects you on a daily basis. Back this up with GP letter of support. Explain everything in detail and leave nothing open to misinterpretation otherwise the assessor will (and is trained and allowed to) input their own interpretation of events as they see them on the day.
    Best wishes

    thank you 'catchacold2' for your sound advice and im really sorry to hear how you had such a long journey to get where you needed to be. I was diagnosed 8 years after been fobbed off with artheritis when I was 19 (I am now 57). I was diagnoised with this lifelong condition with no cure or any operations that could help. was told it is a progressive disease and by gum don't I know it!. I was told there is only painkillers and anti-inflammitrary drugs to help and I would be in a wheelchair by the time I was 50. I have fought this disease from day one , not giving in to it, I have tried to live a normal life as possible and find a way round to do things that was impossible to do and use replace things with others such as removing the bath for a walk in shower as I cannot sit down on the floor with legs out stretched, etc. to cut a long progressive story short!.........I am now curved over with my spine in the shape of a letter 's' I have now developed asthma due to the many chest infections which is related to my ribs crushing my lungs as I was told it would do, and now im having breathing exercise to try and expand my lungs. this is all a knock on effect from my condition  as just an example. my question is although im adamant not to give in I still hold a part time job down at tescos filling shelves. I drug myself up and power nap just before my shift so that I can get through it, 3 times a week. my manager is aware of my condition and the company are brilliant towards what I can and can not do, I have a pass of leave for when I have big flares ups and they ensure the work I do is light. I couldn't ask for more off them. im wondering if this will go against me for working ? on the DLA you were encourage to work now it seems it will go against me as they will view it as I am not what I say I am?
  • BenefitsTrainingCoBenefitsTrainingCo Posts: 2,687Member Pioneering
    Hi suzieboozie,

    I can't add very much to Matilda's advice - as she states, PIP is not about your condition, it is about what you can and cannot do in various activities. What I would say is don't be worried about your job. PIP is absolutely not a benefit for people who can't work. It is a benefit for the extra costs that disabled people face. 

    As Matilda indicates, you may be asked about your day to day life and of course this will include your work to some extent. So be ready to answer questions which explain how you cope with your job. You should explain how the shelf-stacking is possible for you to do, for example, if it doesn't involve much bending then say so, if you have to get colleagues to do certain tasks for you, explain why - and definitely explain how often those flare ups occur, and that you don't do your job during those times.

    It may help to do the PIP self-test, if you haven't already done it, so you can see what the assessors are looking for - if more than one answer could apply, then as Matilda suggests, you select the one that applies at least 50% of the time (it can sometimes be a bit more complicated than that, but I hope that will be enough for you to see what is happening in the test). 

    Finally, when you are asked the questions please do say if something takes you much longer than other people (particularly if it is more than twice as long), or causes you pain, or isn't safe in any way (for example, if you could fall, or drop something), and explain if you can do certain things but not to the standard that other people might expect. 

    That's because all those principles (safety, timeliness, 'acceptable standard', repeatability) have to be taken into account for you to be treated as able to do any of the activities!

    If you are able to, make a note as soon as you can (or, if someone is going with you, make a note at the time) of what the assessor asks you and what you say, so that you are able to contradict any report if necessary. Unfortunately the reports can be very inaccurate sometimes. The assessor probably won't know much about your condition, so when you're asked about your life, it is relevant to say what causes you pain, and what takes far, far longer than for other people.

    I wish you all the best and do let us know how you get on.

    Will
    The Benefits Training Co:
    Paul Bradley
    Michael Chambers
    Will Hadwen
    Sarah Hayle
    Maria Solomon
    David Stickland
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