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Feeling sick in my stomach about the PIP process and how people with disabilities get abandoned with

Sandra7
Sandra7 Community member Posts: 13 Listener
Today our daughter got a letters telling her that she still has zero points after they looked at her request for a Mandatory Reconsideration. Despite her difficulties having increased since her last assessment in 2016 I was not expecting her previous award of Standard Living and Enhanced Mobility to be reinstated. This is because there are so many stories of people being unfairly rejected. I totally get the process and the criteria. I recognise the words used in their decision are out of a cut and paste script and nothing personal to our case. However it is hard to get the following words out of my head: just what do you have to say to prove you fit the criteria?  
I provided extra medical evidence to prove that she has conditions that affect her ability to do things. Her doctor wrote clearly about the pain and fatigue her condition caused her. I’ve explained how her condition affect her ability to do things. I’ve given examples of how and what happens when she can’t do things. It all seems a waist of effort. They seem intent on dismissing or ignoring. information you give. They give the impression they have looked objectively but it’s all smoke and mirrors hoping you will give up. Before all this I already felt let down by a system that abandoned our daughter once she was 16. Looking for suitable evidence it has highlighted how she has been let down by “experts” all her life. They were quick to sign her off when she needed help. For example at school she had regularly toilet accidents but after seeing a consultant he said there was no medical reason and just left us with the problem. She is now 33 and the problem has not gone away. Regularly she wets her pants (at least once a week). When her brain eventually connects that she needs the toilet she struggles to control holding on at the same time as coordinating the right moment needed to get herself to the toilet. It’s frustrating to watch her walking round in circles and getting nowhere. We are now paying privately to see an OT to be assessed and hope this might lead to some kind of support for her many difficulties that have been ignored. Her primary difficulties are caused by her Dyspraxia both verbal and coordination but she has only ever been referred to a speech therapist who have said they haven’t the resources to help her anymore. We asked her GP he could arrange for her to see an OT and he said they couldn’t fund it and maybe we could get her employer to get their occupational health to fund it. I’ve tried phoning and emailing the dyspraxia Foundation and can’t get a reply. Our daughter’s Dyspraxia was because her brain did not develop properly in the womb but she is expected to function like another person without any support when she can’t. Why does our society let down people like this?

Comments

  • nasturtium
    nasturtium Community member Posts: 376 Pioneering
    Hello Sandra7
    Sandra7 said:
    Despite her difficulties having increased since her last assessment in 2016 I was not expecting her previous award of Standard Living and Enhanced Mobility to be reinstated.
    If this was a review which it sounds like then the descision make needs to explain in detail why the Claimants condition that impacts there ability to complete the 12 PIP activities that apply to then safely, repeatedly, in a timely manor or to an acceptable standard have improved since the last assessment to justify a reduction or removal of an award.

    Sandra7 said:
    This is because there are so many stories of people being unfairly rejected.
    They must do thousands of reviews each week and many are reviewed and the Claimant is happy with there descisions. You only read about the bad descisions online because normally a Claimant who is happy with there descision will not post online because they have no reason to post or seek advice. The main reasons why a review is rejected is because either the Claimant has not treated there review form as a new claim or has just written "No Change" on the form instead of outlining there detailed Personal written anacdotal evidence for each activity that applies to them why there conditions mean they cannot complete the PIP activities safely, repeatedly, in a timely manor or to an acceptable standard.
    If you have alread done a MR then you can proceed to appeal that can be done online here https://www.gov.uk/appeal-benefit-decision/submit-appeal
    To help you with your appeal I posted a reply to another User on this forum about how to challenge a reduction in there award after Review including appropriate case law. You can find that information here https://forum.scope.org.uk/discussion/comment/696285#Comment_696285
    Hope that helps
    Nasturtium
    How to challenge a PIP award that has been reduced at Review https://forum.scope.org.uk/discussion/comment/696285#Comment_696285
  • Sandra7
    Sandra7 Community member Posts: 13 Listener
    Thank you for trying to help. It was a MR. In our review we did not write no change because things  have got worse. Their decision said that medical evidence shows that our daughter’s needs have reduced. In our request for a MR I questioned what medical evidence because I can’t find anything to indicate her needs have reduced and our doctors wrote a letter listing her conditions explaining that they cause her pain and fatigue… and that her additional diagnostics has added to her existing difficulties. We be explain how it affects her ability to perform the 12 tasks and said they need to explain how she has improved. The MR decision used lots of stock phrases that on first impressions give the impression that they have dismissed her request because it fails to meet the criteria. They have have filled the decision with a cut and paste list of what is required for each of these levels of help. and says the evidence we have provided indicates our daughter has the ability to carry out the daily living and mobility activities. Her Dyspraxia that she has had since a child has no cure it affects every aspect of her daily life and we have explain how,why, given examples… We’ve stuck to the criteria. They have not and just ignored everything that suits them. I know we have right on our side but so far this has counted for nothing. The next stage is daunting because I already feel unqualified to fight this. Later this month our daughter is seeing an OT for an assessment. We have paid for this because the NHS won’t and we are at our wits end trying to get our daughter the support she needs. I don’t want our daughter to be one of the dead bodies found because the system has let her down. Without her parents she would be alright for a short time but would not know where to start sorting out how to do the 12 tasks and the first thing to go would be sorting out the medical help for her Ulcerative Colitis. It should be criminal what the DWP are doing. If I am struggling to access PIP for our daughter how is she expected to access help once we are gone
  • nasturtium
    nasturtium Community member Posts: 376 Pioneering
    edited October 2023
    The only option now is for you to appeal like I advised and use the advise I gave in those links and the case law if you think it would be helpful. You will stand a better chance of getting the award reinstated at appeal stage.
    Nasturtium
    How to challenge a PIP award that has been reduced at Review https://forum.scope.org.uk/discussion/comment/696285#Comment_696285
  • Hannah_Scope
    Hannah_Scope Posts: 7,093 Disability Gamechanger
    Hello @Sandra7

    I am so sorry to hear about what you are going through with the DWP. I agree with Nasturtium's advice and I'd also encourage you to reach out to your Local MP to make them aware what is happening and they may be able to find more local support to help you and your daughter. 

    Also just wondering what help was needed with your daughter's Ulcerative Colitis? Has she been referred to a gastroenterologist?
    Hannah - She / Her

    Online Community Coordinator @ Scope

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  • Sandra7
    Sandra7 Community member Posts: 13 Listener
    Yes she has regular appointments with her consultant and can get help from specialists nurses when her Ulcerative Colitis “flare up”. Unfortunately the stress of having her PIP stopped has probably been the cause of her Ulcerative Colitis flaring up badly. At the end of August we had to call 111 because she was at the point of collapse after loosing so much blood and being in so much pain.  Since then she has been on steroids and they still have to decide what to do about future medication because blood tests showed she was not only anemic  but her medication had stopped working. It’s all work in progress. She had an iron infusion this week at hospital because she can’t take iron tablets. She would not have been capable of sorting any of this out without our help. She would get lost getting to the hospital and I had to deal with her GP because the hospital failed to give her enough medication. All this on top of grief from sorting out her PIP and Universal Credit   As for our local MP she votes against anything supporting disabled people despite liking a good phot opportunity with disabled people. She won’t be getting my vote next time. When I mentioned contacting contacting our local MP to Citizens Advice they gave me a knowing look saying well you can if you’re got the time to waste. Thanks for your support Hannah. I will follow  Nasturtium’s advice, just worried how our daughter will cope 
  • poppy123456
    poppy123456 Community member Posts: 52,172 Disability Gamechanger
    Please also be aware that they will not take into consideration any worsening of condition since the assessment took place.
    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.
  • Sandra7
    Sandra7 Community member Posts: 13 Listener
    Yes that is a valid point but it is a continual battle with Ulcerative Colitis to keep it under control and the fact that symptoms flare up is part of the unpredictability nature of the condition  
  • woodbine
    woodbine Community member Posts: 11,285 Disability Gamechanger
    It has to be mentioned that PIP is not about what illnesses/conditions you have but the care/mobility issues you have in relation to the descriptors.
    2024 The year of the general election...the time for change is coming 💡

  • chiarieds
    chiarieds Community member Posts: 15,858 Disability Gamechanger
    Hi @Sandra7 - unfortunately the success rate of MRs is quite low at about 23%, but the success rate with a tribunal is currently 68%, so quite a difference. I just wanted to mention the latter in case you didn't know..... so there is hope for your daughter. Tbh the DWP have formed an impression rightly, tho probably wrongly, in your daughter's case. With a tribunal, & please do request this in person/by phone or video call, you will just see a judge, a Dr, & someone with some disability knowledge, & they will just want to find out how your daughter's disabilities affect her the majority of the time (they are also completely separate from the DWP).
    All that you have done on your daughter's behalf is not a waste of effort, as all you have written will be seen by a tribunal. It's so disheartening when members feel they haven't been listened to, & the 'cut & paste' responses in decision letters often make a person feel this way. Please put these letters behind you if you possibly can, & please don't be daunted in trying to make things right for your daughter by applying for a tribunal.
    Whilst mentioning medical evidence is valid, please, as I'm sure you've done, don't concentrate solely on this. You seem to have a good understanding about so much with PIP, but don't get bogged down in thinking the DWP have 'ignored' things, just unfortunately they've, as mentioned, formed the wrong impression. 
    It must seem a bit of a minefield to rectify this, but you can. Emphasise about your daughter's difficulty with regard to the PIP descriptors, & give more detail. Not that she can't do this because of her dyspraxia, or is in so much pain due to her Ulcerative Colitis, but by saying exactly how she is affected in detail. This, to my mind, will bring her claim alive. All the medical evidence just indicates your daughter likely has some difficulty. Put a couple of dozen people in a room with her medical problems, & they'll all be different, so, in case you haven't done this (& bearing in mind with a tribunal, your daughter's diagnoses won't be in dispute, & tribunals know that often an assessment report on which a decision maker usually bases their decision is often poor), please, as mentioned above, put the 'medical evidence' also to one side.
    Rather say, exactly where your daughter needs support, & why. Give a couple of detailed examples as to what happened when she attempted any applicable activity/descriptor on her own. What exactly happened, when did this happen, who saw this, & what were the consequences?
    Do mention the variability of her Ulcerative Colitis problems, as this should be taken into account, but please do again give a couple of recent (at the time of her assessment) examples as to how, why, when, etc. this affected her, & any consequences. This makes her disabilities unique to her, I hope you see.
    If you haven't come across this before, it's also worth reading thoroughly, especially the section on 'reliability:' https://www.gov.uk/government/publications/personal-independence-payment-assessment-guide-for-assessment-providers/pip-assessment-guide-part-2-the-assessment-criteria
    You can do this, &, as you've seen, members here will help to the best of their ability.

  • Sandra7
    Sandra7 Community member Posts: 13 Listener
    Thank you for your response Chiarieds (I hope I’ve spelled that right as I have Dyslexia). You have really helped me make sense of what I need to do. The final stage was really feeling overwhelming, as I feel such a weight of responsibility to make the right decisions so I don’t let our daughter down. She relies so heavily on us to sort things for her. The process of knowing what to do and say has sent our daughter into a downward spiral and this in turn has had an affect on her Ulcerative Colitis. This means with are dealing not only PIP but trying to manage her poor health with lots of appointments to treat  and manage things. Your response has been so helpful unraveling what happens next xx
  • chiarieds
    chiarieds Community member Posts: 15,858 Disability Gamechanger
    Thank you for your kind reply @Sandra7 - & yes, you spelt my user name correctly :) I'm pleased my reply has helped a little, & I also hope it helps your daughter to know the good success rate with a tribunal.
    You can now appeal to a tribunal online: : https://www.gov.uk/appeal-benefit-decision/submit-appeal
    Just give a shortish reason as to why your daughter is appealing. You can then go back to this later to add any other evidence (hopefully this being that detailed anecdotal evidence as to exactly how your daughter's disabilities affect her, & where she needs your support). Don't forget to choose that you'd like the tribunal to be by phone, as you can select a telephone hearing.
    With the tribunal they will want to hear from your daughter, but you can be with her for support (just put her phone on loudspeaker).
    You may wish to consider getting some local expert help, so try here: https://advicelocal.uk/welfare-benefits    If there's a Welfare Rights Office that is able to help, that would be the best option. Many people do go through a tribunal on their own, however.
    I hope your daughter's bad Ulcerative Colitis flare settles down as soon as possible. Please do come back with any questions.
  • poppy123456
    poppy123456 Community member Posts: 52,172 Disability Gamechanger
    chiarieds said:

    With the tribunal they will want to hear from your daughter, but you can be with her for support (just put her phone on loudspeaker).


    Unless they are her appointee.
    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.
  • chiarieds
    chiarieds Community member Posts: 15,858 Disability Gamechanger


    Unless they are her appointee.

    Agreed, but this hasn't been mentioned thus far.

  • poppy123456
    poppy123456 Community member Posts: 52,172 Disability Gamechanger
    chiarieds said:


    Unless they are her appointee.

    Agreed, but this hasn't been mentioned thus far.


    Yes i had noticed but still worth mentioning just incase they are the appointee.
    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.

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