Does anyone feel they could help please?

mmpadgett
mmpadgett Online Community Member Posts: 2 Listener
edited June 2023 in PIP, DLA, ADP and AA
Hello everyone, I have never spoken out about my struggles before but here goes. I am 48 years old, I was awarded high rate mobility and high rate care for life when I was 18years old as my conditions are degenerative. When the government decided to change to PIP however I was taken off high and put on the low rate of both components, and despite a mandatory reconsideration and 17 months waiting for an appeal the decision was upheld. At my last review nothing was changed despite me getting worse and telling the assessor not a day goes by when I don't have suicidal thoughts. I have just had to do another review and have absolutely no faith in the system at all. I suffer with osteoarthritis, fibromyalgia, elhers danlos, degenerative disk disease , severe canal stenosis lumbar , to the point that on my last MRI they put almost cauda equina, disk dessication, central disc profusion,under active thyroid, AV nodal re-entry, severe depression and anxiety, asthma, I have to have my bowels irrigated every 48hours due to slow moving bowl causing chronic constipation. I have been living in my living room for over a year now on a profiling bed, I have a commode, and a rise and fall chair. I can move the couple of feet in between the 3 with a frame , in severe pains and my legs violently shaking. I am all but bed bound, my husband is my full time carer. I have carers that come once a day to help me wash, all done on my bed. The only time I go out is for a hospital appointment that cannot be done over the phone or at home. When I do go out it is in my wheelchair which I am unable to propel myself due to weakness, excruciating pain , due to the fact that as soon as I try the spasms in my back start and I look like the hunchback. I am on tramadol, pregablin, morpine patches, oramorph, duloxotene, amitriptyline, celecoxib, levothyroxene, bisoprolol, methocarbamol, Paracetamol, 3 different inhalers, 3 movicol a day with senna and using the peresteen plus system for irrigation at home every 48 hours which hubby does. So after getting all that off my chest, and thanking you all so much for listening, I was wondering if there was anyone that feels that they may be able to help me fight PIP when the decision comes back, not in my favour. As you can tell I have zero faith in the system, and very little fight left in me, so I am trying to get a little army ready so that when I get the dreaded letter I am forearmed and ready. Once again a huge thank you to you all. I hope your all doing as well as can be, and trying to keep smiling because that's all we can do. 😊

Comments

  • mmpadgett
    mmpadgett Online Community Member Posts: 2 Listener
    Hello everyone, I have never spoken out about my struggles before but here goes. I am 48 years old, I was awarded high rate mobility and high rate care for life when I was 18years old as my conditions are degenerative. When the government decided to change to PIP however I was taken off high and put on the low rate of both components, and despite a mandatory reconsideration and 17 months waiting for an appeal the decision was upheld. At my last review nothing was changed despite me getting worse and telling the assessor not a day goes by when I don't have suicidal thoughts. I have just had to do another review and have absolutely no faith in the system at all. I suffer with osteoarthritis, fibromyalgia, elhers danlos, degenerative disk disease , severe canal stenosis lumbar , to the point that on my last MRI they put almost cauda equina, disk dessication, central disc profusion,under active thyroid, AV nodal re-entry, severe depression and anxiety, asthma, I have to have my bowels irrigated every 48hours due to slow moving bowl causing chronic constipation. I have been living in my living room for over a year now on a profiling bed, I have a commode, and a rise and fall chair. I can move the couple of feet in between the 3 with a frame , in severe pains and my legs violently shaking. I am all but bed bound, my husband is my full time carer. I have carers that come once a day to help me wash, all done on my bed. The only time I go out is for a hospital appointment that cannot be done over the phone or at home. When I do go out it is in my wheelchair which I am unable to propel myself due to weakness, excruciating pain , due to the fact that as soon as I try the spasms in my back start and I look like the hunchback. I am on tramadol, pregablin, morpine patches, oramorph, duloxotene, amitriptyline, celecoxib, levothyroxene, bisoprolol, methocarbamol, Paracetamol, 3 different inhalers, 3 movicol a day with senna and using the peresteen plus system for irrigation at home every 48 hours which hubby does. So after getting all that off my chest, and thanking you all so much for listening, I was wondering if there was anyone that feels that they may be able to help me fight PIP when the decision comes back, not in my favour. As you can tell I have zero faith in the system, and very little fight left in me, so I am trying to get a little army ready so that when I get the dreaded letter I am forearmed and ready. Once again a huge thank you to you all. I hope your all doing as well as can be, and trying to keep smiling because that's all we can do. 😊
  • nasturtium
    nasturtium Online Community Member Posts: 390 Empowering
    edited June 2023
    Hello mmpadgett
    You said you had to do another review. Have you sent the review off already?
    If you have not then I would get advice before filling in your review form. If you have sent off the review form and your award is still the same then you can apply for a Mandatory Reconsideration once you have the desision letter then a tribunal but I would advise you seek advice for both before doing so.
    PIP is not based on a diagnosis or the amount of pain medication you take. You get awarded PIP based of the problems you have completing the 12 PIP activities reliably (safely, repeatedly, in a timely manor and to an acceptable standard) that apply to you and the help you need according to the descriptors for that activity for the majority of days (more than 50% of the time)
    My advice would be to ask your husband who cares for you to seek advice from your local welfare advice center which he can find by searching using your postcode in the search box from this webpage https://advicelocal.uk/welfare-benefits
    If your husband cares for you he will know your daily struggles and difficulties with your daily living and mobility. You can ask him to write a detailed letter of support expaining the help he gives you and the help you need (according to the applicable descriptor) and why you need that help. The "why" bit is very important because it will show that you have the problems and you need the help.
    If you or your husband needs help with the descriptors and what they mean then the Government has a section on there site about what the PIP assessment means and what the assessors are loking for. It explains and outlines what "Reliably" means and it explains what the various PIP activities and descriptors mean. You or your husband can find the information here https://www.gov.uk/government/publications/personal-independence-payment-assessment-guide-for-assessment-providers/pip-assessment-guide-part-2-the-assessment-criteria
    If you need more information on how to fill in the application form or about the descriptors then Citizens advice have a good section on there site about filling out the PIP form and what you need to include on the forms. It also outlines and explains what the descriptors mean https://www.citizensadvice.org.uk/benefits/sick-or-disabled-people-and-carers/pip/help-with-your-claim/fill-in-form-pip/
    Please get help from your husband and an advice agency if you can.
    Hope that helps.
    Nasturtium

  • faraway_21
    faraway_21 Online Community Member Posts: 44 Connected
    mmpadgett said:
    Hello everyone, I have never spoken out about my struggles before but here goes. I am 48 years old, I was awarded high rate mobility and high rate care for life when I was 18years old as my conditions are degenerative. When the government decided to change to PIP however I was taken off high and put on the low rate of both components, and despite a mandatory reconsideration and 17 months waiting for an appeal the decision was upheld. At my last review nothing was changed despite me getting worse and telling the assessor not a day goes by when I don't have suicidal thoughts. I have just had to do another review and have absolutely no faith in the system at all. I suffer with osteoarthritis, fibromyalgia, elhers danlos, degenerative disk disease , severe canal stenosis lumbar , to the point that on my last MRI they put almost cauda equina, disk dessication, central disc profusion,under active thyroid, AV nodal re-entry, severe depression and anxiety, asthma, I have to have my bowels irrigated every 48hours due to slow moving bowl causing chronic constipation. I have been living in my living room for over a year now on a profiling bed, I have a commode, and a rise and fall chair. I can move the couple of feet in between the 3 with a frame , in severe pains and my legs violently shaking. I am all but bed bound, my husband is my full time carer. I have carers that come once a day to help me wash, all done on my bed. The only time I go out is for a hospital appointment that cannot be done over the phone or at home. When I do go out it is in my wheelchair which I am unable to propel myself due to weakness, excruciating pain , due to the fact that as soon as I try the spasms in my back start and I look like the hunchback. I am on tramadol, pregablin, morpine patches, oramorph, duloxotene, amitriptyline, celecoxib, levothyroxene, bisoprolol, methocarbamol, Paracetamol, 3 different inhalers, 3 movicol a day with senna and using the peresteen plus system for irrigation at home every 48 hours which hubby does. So after getting all that off my chest, and thanking you all so much for listening, I was wondering if there was anyone that feels that they may be able to help me fight PIP when the decision comes back, not in my favour. As you can tell I have zero faith in the system, and very little fight left in me, so I am trying to get a little army ready so that when I get the dreaded letter I am forearmed and ready. Once again a huge thank you to you all. I hope your all doing as well as can be, and trying to keep smiling because that's all we can do. 😊
    Hello 👋 

    I would encourage you to read the guidance for PIP (page 87 onwards) - it explains in full the assessment criteria under each activity. 

  • nasturtium
    nasturtium Online Community Member Posts: 390 Empowering
    edited June 2023
    faraway_21 said:
    Hello 👋 

    I would encourage you to read the guidance for PIP (page 87 onwards) - it explains in full the assessment criteria under each activity. 

    Hello faraway_21
    I posted the link that you included in your reply but I did not specify a page number for a reason. The link also includes information about completing the activities "Reliably" and what the criteria for Reliably means. The reason why this is important is because the criteria for Reliably is enshrined in law. So if you cannot do the activity safely then by law you cannot be classed as being able to do that activity "Reliably" so you should then score points for the applicable descriptor.
    So I would like to advise the origional poster and anyone else reading this forum post to also read the "Reliably" criteria also because it is a very important part of PIP.
    Nasturtium

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