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my condtion

kimdyer18kimdyer18 Member Posts: 52 Connected
Hi,
i have just been diagonsed with spastic pararlegia. i have my pip assessment tomorrow and was wondering what other people had been through with this and what type of pip they had recieved. Also my husband looks after me full time, takes me shopping, helps with dressing and getting in out of bath also does all cooking and cleaning as im finding this increasingly more difficult. Would he be able to claim a carers allowence for the all work he puts in. i feel so helpless at the moment

Replies

  • PinPin Member Posts: 132 Courageous
    Hi Kim

    sorry to hear life is so difficult just now, I hope your assessment goes well tomorrow. It depends on how your condition affects you what you will receive, make sure you tell the assessor everything you’ve said above.

    carers allowance is given if you receive PIP (not sure what level, someone else will know) but it is income related so If your husband works he may not be eligible.

    Try not to worry about the assessment, everyone has differeent experiences.

  • kimdyer18kimdyer18 Member Posts: 52 Connected
    hi hun thanks for your reponse i hope it goes well too i just want a normal body back 
  • PinPin Member Posts: 132 Courageous
    I think a lot of us on here can sympathise, although we all have different conditions.

    for me, I live with pain and hearing loss after cancer. The original malignancy is now gone but has left a bit of a mess. Unfortunately there’s no going back and it’s a case of making a new normal.

    have you found a foundation or charity supporting people with your condition? Some people find that really helpful and others hate it - just find what is best for you.
  • kimdyer18kimdyer18 Member Posts: 52 Connected
    no i havent i found out about my condtion last friday its a hedtiary condtion taken nine months to found out i keep falling all the time cant drive far have to be in wheelchair if im out with family on a day out i used to be a support work a month ago 
  • PinPin Member Posts: 132 Courageous
    It sounds like you’ve had a really tough time. The posters on here are really knowledgable and will be able to give you information on things like ESA and PIP.

     I’ve had a quick google and found this: http://www.hspgroup.org/ not sure if it’s the correct condition but might be of interest.

    it must be quite a shock but also perhaps a relief to finally have some answers? 
  • kimdyer18kimdyer18 Member Posts: 52 Connected
    thanks hun  ill have a look i think ive had it from 13 years old i now have 3 year old cant do much cuz of my legs 
  • TopkittenTopkitten Member Posts: 1,263 Pioneering
    An interesting point you raised there @kimdyer18. Would I want my healthy body back? I have spent so many years dealing with a deteriorating body that I don't think I could cope with a healthy one now. There are also the other problems of re-integrating back into society that I doubt I could handle either, lol!

    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.
  • kimdyer18kimdyer18 Member Posts: 52 Connected
    thanks topkitten my symtoms have got worse since 2015 after my daughter  was born in september 
  • ChrisGChrisG Member Posts: 23 Connected
    If it is anything like the assessment I went to the person doing the assessment will have read your questionnaire and come up with a plan to extract answers that can be used to advise the lowest possible descriptor.  

    Wherever you have said that you need help to do something they will word their questions carefully to get you to contradict what you said.

    The assessor will ask you lots of leading questions in the run up to the important one that they want to trip you up on. These questions require a simple yes answer and then they slip in the question that they want you to answer yes to. They already know the answers you are going to say yes to because you put it all in the questionnaire.

    My partner put in questionnaire that she needed help managing her finances and that I made a spreadsheet to keep track of everything for her. 

    This is one her assessor used 

    You said you do your shopping online?                Yes
    every two weeks, is that right?                              Yes
    How do you pay your rent? by direct debit?        Yes
    And your other bills? All by direct debit?             Yes

     and YOU keep track of all your finances using a spreadsheet? 

    Because she was now in the habit of saying yes and it sounded right because her finances are managed using a spreadsheet she answered - Yes. 

    This is the answer the assessor then used to say she reported at the assessment that she keeps track of her finances using a spreadsheet and advised 

     can manage complex budgeting decisions unaided. 0 Points. 

    Look out for this tactic at your assessment.  Make sure you explain everything that you need help with. Once they have the answer they want they will want to move on quickly to the next question.  

    They are there to find any reason to deny you points, don’t be fooled by the nice smile and assurances that they don’t make the decision and are just there to assess your conditions.  












  • kimdyer18kimdyer18 Member Posts: 52 Connected
    thank chrisGfor the advice 
  • PinPin Member Posts: 132 Courageous
    Kim please don’t focus on the horror stories. Be optimistic and keep your chin up. 
  • kimdyer18kimdyer18 Member Posts: 52 Connected
    i wont ill keep u post tomorrow there coming to my house 
  • YadnadYadnad Member - under moderation Posts: 2,862 Disability Gamechanger
    edited August 2018
    ChrisG said:
    If it is anything like the assessment I went to the person doing the assessment will have read your questionnaire and come up with a plan to extract answers that can be used to advise the lowest possible descriptor.  

    Wherever you have said that you need help to do something they will word their questions carefully to get you to contradict what you said.

    The assessor will ask you lots of leading questions in the run up to the important one that they want to trip you up on. These questions require a simple yes answer and then they slip in the question that they want you to answer yes to. They already know the answers you are going to say yes to because you put it all in the questionnaire.

    My partner put in questionnaire that she needed help managing her finances and that I made a spreadsheet to keep track of everything for her. 

    This is one her assessor used 

    You said you do your shopping online?                Yes
    every two weeks, is that right?                              Yes
    How do you pay your rent? by direct debit?        Yes
    And your other bills? All by direct debit?             Yes

     and YOU keep track of all your finances using a spreadsheet? 

    Because she was now in the habit of saying yes and it sounded right because her finances are managed using a spreadsheet she answered - Yes. 

    This is the answer the assessor then used to say she reported at the assessment that she keeps track of her finances using a spreadsheet and advised 

     can manage complex budgeting decisions unaided. 0 Points. 

    Look out for this tactic at your assessment.  Make sure you explain everything that you need help with. Once they have the answer they want they will want to move on quickly to the next question.  

    They are there to find any reason to deny you points, don’t be fooled by the nice smile and assurances that they don’t make the decision and are just there to assess your conditions.  
    In fact for all three of my assessments there was no alternative but to say yes or no. They were not interested in hearing anything that I wanted to say other than an answer that best suited them.
    For most of my time with them they simply got a blank stare which meant they had to put the answer in which wasn't what I said! It was that or be prepared for me to lose it with them - as was probably noticed by my body language.
    Fun and games organised by a condescending and deceitful individual who clearly had no idea how to run a successful assessment.
  • PinPin Member Posts: 132 Courageous
    How did it go?
  • kimdyer18kimdyer18 Member Posts: 52 Connected
    hi pin it went ok didnt last long i told her everything 
  • PinPin Member Posts: 132 Courageous
    fingers crossed, if you phone in a weeks time you can get the report which will give you a rough idea of what they’ve decided.
  • kimdyer18kimdyer18 Member Posts: 52 Connected
    brilliant thanks hun
  • Pippa_ScopePippa_Scope Member Posts: 5,856 Disability Gamechanger
    Fingers crossed for the outcome you're hoping for, @kimdyer18!
  • kimdyer18kimdyer18 Member Posts: 52 Connected
    thanks 
    Pippa i can also get esa now is well 
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