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PIP letter has arrived.

rosscolfcrosscolfc Posts: 29Member Courageous
So the transfer from DLA to PIP letter has arrived. 
I've been dreading it as i've a rare condition and its not something that can be googled/looked up and as PIP are not interested in any actual medical advice i'm worried. 

I have a permanent disability, since birth, ALL my muscles and joints are effected every day and i take morphine for the pain, but some days i feel OK so try to do what i can to lead a normal life as i enjoy things like Gardening, Cooking and being outside. but im not cured on these days. for example it took me 5 weeks to move a dog kennel. doing a bit each day hour here and there and stopping every few days to rest. most "able" people i'm sure would have done this in 2/3 hours.

Then other days i cant move from bed/sofa i'm agony and unable to wash even brushing my teeth is effort as my arms cramp up, and crawling to the toilet is the most moment i can do.

I have been told that when they mention hobbies like gardening etc, not to mention the things i do on "good days" as it will be twisted to make me out to be Monty Don swinging from tree to tree and able to dig a new channel tunnel all on my own.

So what is peoples advice, is PIP very much a worse day situation. 
as if i was to quantify my situation id say i have 2, 3 "good days if i'm lucky but the rest of the time i am pretty much sofa/house bound.

Replies

  • CockneyRebelCockneyRebel Posts: 5,250Community champion Disability Gamechanger
    Hi

    First thing is to understand that DLA and PIP use different criteria. PIP ismore about functionallity than condition. A good place to start is the B&W self test

    http://www.mybenefitsandwork.co.uk/pip/indexxx.php

    It is necessary to supply any medical or other supporting evidence that you can. More important is to fully descrbe how you are affected and a good way to do this is to keep a diary for at least a week

    CR

    Be all you can be, make  every day count. Namaste
  • BenefitsTrainingCoBenefitsTrainingCo Posts: 2,679Member Pioneering
    Hi rosscolfc,

    The law states that you score points on the PIP descriptors if they apply to you for more than 50% of the time, so if you have more bad days in a week than good, and you are affected at least 4 days out of 7, then you should score the necessary points. 
    All you can do is tell them exactly how it is for you, both on the claim form and at the assessment. The chances are that the medical professional who does the consultation with you will make their own mind up anyway, but all you can do is be honest and provide any medical evidence that you have. Good luck!

    Lee
    The Benefits Training Co:
    Paul Bradley
    Michael Chambers
    Will Hadwen
    Sarah Hayle
    Maria Solomon
    David Stickland
  • CockneyRebelCockneyRebel Posts: 5,250Community champion Disability Gamechanger
    While the law states the 50% rule this unfortunately is one area that at best is ignored by HCP's more often their assumption will be for less that 50% and it is a very hard point to prove. You should use it but your evidence in other areas can  be more proveable

    CR
    Be all you can be, make  every day count. Namaste
  • MatildaMatilda Posts: 2,616Member Disability Gamechanger
    It helps to submit a 7 day diary that shows clearly that on at least 4 days out of 5 you meet the PIP criteria.  If you don't get the award you want after assessment, the diary will help your appeal.  My diary helped me win my appeal.
  • rosscolfcrosscolfc Posts: 29Member Courageous
    Hi rosscolfc,

    The law states that you score points on the PIP descriptors if they apply to you for more than 50% of the time, so if you have more bad days in a week than good, and you are affected at least 4 days out of 7, then you should score the necessary points. 
    All you can do is tell them exactly how it is for you, both on the claim form and at the assessment. The chances are that the medical professional who does the consultation with you will make their own mind up anyway, but all you can do is be honest and provide any medical evidence that you have. Good luck!

    Lee
    Thanks for the info Lee.
  • RosiesmumRosiesmum Posts: 76Member Connected

    Just wanted to wish you the best of luck with your claim.My son's has been a bit of a disaster so in hindsight here are the things I would do differently for him next time.

    As @Matilda suggests do complete the diary and send it with your pip form.

    Go through each activity listed and match the descriptor you think you fit with a medical report stating your level of function in that area,eg if you cannot stand for long and this is documented apply it to the cooking question as well as the mobility part as if you need to sit while cooking that is classed as using an aid.Send a report or get one before your assessment if possible to hand to HCP or use at MR if needed.

    If you have OT reports do include these as they usually state why the aids are being supplied as well as what they are.

    Be prepared for 'closed questions' which state for example 'so you go out every day?' If you are unsure state NO then carry on your answer rather than yes as the assessor barely continues to listen after you say yes to anything.Ask me how I know lol...

    I did read somewhere you can actually check as they are typing what is being written so this is your chance to make sure things are correctly recorded.I did not know this but perhaps someone can verify this is right?? If able to at least this avoids the chances of incorrect info being recorded.

    My GP wrote a brilliant supporting letter after the assessment..see if you can get one stating your current issues and especially level of limb function as this is crucial to the whole thread of the assessment if claiming on physical grounds.

    After the assessment ask for a copy of the report and go through it with a fine toothcomb and if it is wrong,however minor then let the DWP and ATOS/CAPITA know because the more we stand up to them and insist on a proper,fit for purpose assessment the better hopefully the system will become. *still hopeful* :)

    Be aware all assessors are NOT equal...my son has similar issues to you and we had a mental health nurse then a speech and language therapist.Others with mental health issues have had paramedics and so on.Their credentials can be crucial to their understanding of complex conditions. There is info on here of how to find out about your assessor if needed for example if you need to make a complaint.


                                                                                                                                                    

  • MatildaMatilda Posts: 2,616Member Disability Gamechanger
    Correction to my post above; 7 day diary should show that on at least 4 days out of 7 (not out of 5) your disabilities meet the PIP criteria.
  • rosscolfcrosscolfc Posts: 29Member Courageous
    Won't be an issue. As I've said if I'm lucky I get 3 "good days" most of the time on in the house doing very little. 
  • mandy46mandy46 Posts: 30Member Connected
    I had an assessment for pip and told her the truth ...I have No good days....
  • BenefitsTrainingCoBenefitsTrainingCo Posts: 2,679Member Pioneering
    rosscolfc,

    I can't add much to the excellent advice you've been given so far. Medical evidence is always useful and don't hesitate to add to it even if it doesn't arrive until after your assessment. If your condition affects you for more than an insignificant amount of time on any one day, then that day is one of the days to count - as well of course as the days when you are affected most of the time.

    Think about the descriptors and do the PIP self-test if you can, to see what points you think you should get. However, as CR indicates, don't be surprised if the assessors ignore the facts and the law. It sounds as if you have read enough about this to know what to expect. Do challenge any decision which doesn't award you benefit, and get advice if you get PIP but it's not as high as you think it should be.

    Rosiesmum, as for checking what is being typed as it is happening, technically I think a data controller (the assessment company) doesn't have to supply information without a request in writing.  I'd be worried as well about an assessor reacting badly and deciding that you hadn't 'participated' if you kept asking for the record to be changed. A request asking for a copy of the report should, of course, be successful.

    I absolutely think that people should complain if the reports are factually incorrect, and take action if that causes them harm, as it so often does. To be more certain of what actually happened at an assessment, I'd recommend having someone with you to take notes, or record the assessment according to the assessment company's policy (this usually requires some advance planning). 

    I appreciate that if you can see they are writing down something factually wrong that is completely unreasonable - but I think the assessment company's response would probably be that the report has to be in the HCP's words. Of course this doesn't mean that you can't ask as they are going along, more that I would be cautious and that your legal right to see the data applies once you've made a request in writing.

    Good luck rosscolfc,

    Will
    The Benefits Training Co:
    Paul Bradley
    Michael Chambers
    Will Hadwen
    Sarah Hayle
    Maria Solomon
    David Stickland
  • wilkowilko Posts: 1,934Member Disability Gamechanger
    Getting your PIP report is easy to do, just ring the freephone 08001214433 answer the security questions then request a copy of your PIP acessment  report should come in about 10 days. Reading the report should allow you to work out what your award should or may be, then wait the weeks for your award letter. My F2F was on 25-11-17 still waiting for award letter had to ring three times for the report and have rang twice about delay in award letter and this is for a change of circumstances been informed the decision makers are weeks behind should have it in two weeks.
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