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Absolutely worried sick and need pointing in the right direction.

sagwala123 Member Posts: 1 Listener
edited April 2021 in PIP, DLA, and AA
I have claimed DLA and now PIP for over 25 years.

I have  had my 5 year review (over the telephone) which decision was to significantly reduce my award. And also now affect s my husband's ability to claim carers allowance. We are about £500 a month down on our income. 

The mandatory reconsideration decision has come back today as no change. (Although for some strange reason we didn't receive the letter which was sent 5 weeks ago ?) I had to call as it has been almost 9 weeks. 

We have been told that we can appeal to the HM Appeals but that needed to be done within a month so we will also need to ask for exceptional circumstances.

We really do not know the way forward and do not feel we have the know how to attempt a successful appeal.

We are still in shock as to how after 25 years of a degenerative condition the decision can be so monumentally changed. 

Any advice as to any organisations that could assist in putting together an appeal would be appreciated.

It is putting us under extreme pressure financially, as only recently has my husband reduced his workload with the help of carers allowance, so that he can care for my increased needs. 

Thankyou in advance. 


  • calcotti
    calcotti Member Posts: 5,306 Disability Gamechanger
    Look for an advice agency https://advicelocal.uk/
    Information I post is for England unless otherwise stated. Rules may be different in other parts of UK.
  • mikehughescq
    mikehughescq Posts: 8,847 Connected
    There is nothing to be concerned about if you have slipped outside the one month to appeal. There is a brick wall limit of 13 months. You don’t need to provide any reasons for lateness (although you will be asked) but you will need to show there is some merit to your claim. You’ve already done that here. Degenerative condition and yet reduced award. 

    Generally the issue with reduced awards in these circumstances is four fold:

    1 - people assume stuff is obvious and it really isn’t. There is an assumption that if the PIP 2/AR 1 form is completed broadly similar to the last one all will be well. Rarely the case. 

    2 - renegade HCP assessment.

    3 - it is perfectly okay, within reason for 2 DMs to look at the same evidence and come to different conclusions. It’s what we do in life every day and yet somehow it becomes outrageous when applied to fundamentally subjective stuff like pain, functionality etc.

    4 - if it’s lifelong and degenerative then why ever accept a 5 year award? Next time you do this explicitly request a 10 year/ongoing award and explain why. 
  • cupcake88
    cupcake88 Posts: 1,234 Pioneering
    I’m so sorry this has happened what a worry it must be I really hope the appeal goes well and you get your Full pip back xxx 
  • Cher_Inactive
    Cher_Inactive Posts: 4,412

    Scope community team

    Hi @sagwala123 and welcome to our community.

    I'm sorry the initial decision went that way, I can imagine it's been an upsetting time for both you and your husband.  All is not lost though and, as @calcotti advised above, please do seek specialist advice from an organisation listed on Advice Local.  If you enter your postcode and select 'Welfare benefits' from the 'Choose an advice topic' tab on their first screen, then scroll down on the next page, it will bring you to a list of local organisations who can help.

    Please let us know how you get on and I have my fingers firmly crossed.
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  • SuePaul07
    SuePaul07 Member Posts: 6 Listener
    Good morning @sagwala123
    I, too, can fully understand what a worrying time this must be for you (we went through much the same with my husband) but, as others have said, all is not lost.  You can appeal and you absolutely should and yes, I would get some specialist advice to help you do that.  Remember, it's not about the condition - it's about how it affects you in every facet of daily life.  Really hope you are successful and best wishes.
    Best wishes

    "It is not the critic who counts; not the man who points out how the strong man stumbles, or where the doer of deeds could have done them better. The credit belongs to the man who is actually in the arena, whose face is marred by dust and sweat and blood; who strives valiantly; who errs, who comes short again and again, because there is no effort without error and shortcoming; but who does actually strive to do the deeds; who knows great enthusiasms, the great devotions; who spends himself in a worthy cause; who at the best knows in the end the triumph of high achievement, and who at the worst, if he fails, at least fails while daring greatly, so that his place shall never be with those cold and timid souls who neither know victory nor defeat."  Theodore Roosevelt - "The Man in the Arena" - a speech given at the Sorbonne, Paris on 23.04.1910.
  • joethebear
    joethebear Member Posts: 18 Connected
    Sorry to hear about your predicament @sagwala123 it more or less mirrors mine 4 years ago when I transferred from DLA to pip lifetime award reduced and lost my car and a fair bit of money , I can assure you that I didn't accept low award as some people have said to you it was what I got !! MR  no use and I wasn't in the right frame of mind to fight any further , fast forward to now and I've just had phone assessment by a lovely woman who was genuinely interested in my health she said I'll be on highest rate for both and recommended not to be bothered for a long time , sure enough got letter last week confirming this !! I have degenerative spinal problems and heart trouble and she said I wouldn't get any better , just a bit good news as I can understand you will be traumatised with what's going on and just need helpful advice not patronising !! Sadly it's in the hands of health professionals and I might have got a lot less with the person who phoned you which is very wrong good luck on Mr and appeal if you go down that avenue 


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