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Hi, my name is rachaelT84!

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rachaelT84
rachaelT84 Community member Posts: 4 Listener
edited August 2023 in PIP, DLA, and AA
I had my assessment a few weeks ago ....I then asked for a copy an I'm absolutely heart broken
I suffer from fybro chiari malformation 1 anexity chronic headaches an spinal issues when I had assesment every time I tried to refer to my headache episodes she basically dismissed them saying she knew about them but wanted me to answer about my shoulders an spine problem.....she said she would ask about the headaches later which was very brief. I was diagnosed with brain issue in 2018 after suffering headaches for about 2 years I was told by neurology that I couldn't take medication for fybro. So I've been trying to manage pain myself as he was rude an said I had made the headaches worse myself even though he had no notes to go by not even my MRI. I have been to hospital lots I've had balance therapy leg scans etc but my doc has said that I have never had meds nor have I had any of the investigation I mentioned to the women. I'm heartbroken as I am suffering so much I refuse mendication due to the vike report for nerology implying I did it to myself an has given me major anexity in regards to recieving help. What can I do as docs are clearly mis leading I've had meds in past I've had investigations but reports states unlikely as docs have implied I havnt I didn't score anything I carnt believe this is happening.
I've had no referral to neuro for last 5 years docs have sent for referral 8 times. I also have partial dislocated right shoulder with no explanation it's like I'm falling apart an no one cares...what shall I do 

Comments

  • Jimm_Scope
    Jimm_Scope Posts: 3,560 Disability Gamechanger
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    Hi @rachaelT84, I know this is a really difficult and stressful situation. We are here to listen and support you. We care and we are here to try and help. There are people here who have gone through situations similar to yours, people who understand the daily struggle it can be.

    Can I just clarify one thing, the assessment you are referring to? Was it a PIP assessment? That'll help me narrow down and find you the best advice and support we can.
    They/Them, however they are no wrong pronouns with me so whatever you feel most comfortable with
    Online Community Specialist

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    Opinions are my own, such as mashed potato being bad.
  • rachaelT84
    rachaelT84 Community member Posts: 4 Listener
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    Yes PIP I don't have many letters as I never kept referrals an things never thght I needed them. I asked doctor to provide an they said pip would contact them....all they gave me was a basic print out which I questioned straight away as meds from past an present were missing. Also scan results an other thing an my weight was when I was full term pregnant in 2012 which is over 10 years ago. She said it didn't matter an that they would contact them .   But from the assessment with score of zero I find it hard to believe 
  • poppy123456
    poppy123456 Community member Posts: 56,990 Disability Gamechanger
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    They very rarely contact anyone for any evidence. The onus is on the claimant to prove they qualify and not theirs.

    The assessment report is a recommendation only, it's not the actual decision letter. If you haven't yet had the decision you need to wait for that before you can request the Mandatory Reconsideration. (MR) Whilst they mostly do go with the report, it has been known for them to go against it.

    Medical evidence isn't essential for a successful PIP award. Many people are successfully awarded without medical evidence.

    When you filled out the form did you give as much relevant information as possible? without telling your life story? The most important part of filling out the form is giving real world incidents of exactly what happened the last time you attempted each descriptor that applies to you. Adding detailed information such as where you were, what exactly happened, did anyone see it and what the consequences were. Ideally, you should aim for at least half and A4 side of paper per descriptor that applies to you.

    It also helps to have some understanding of the descriptors and what they mean, few people understand them. Doing some research before applying always helps. This will help with that. https://www.gov.uk/government/publications/personal-independence-payment-assessment-guide-for-assessment-providers/pip-assessment-guide-part-2-the-assessment-criteria

    Is this a first time claim or a review of an existing claim?

    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.
  • Jimm_Scope
    Jimm_Scope Posts: 3,560 Disability Gamechanger
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    Just going to move this to the PIP section for better visibility.

    Do keep us up to date with how you're doing @rachelT84
    They/Them, however they are no wrong pronouns with me so whatever you feel most comfortable with
    Online Community Specialist

    Concerned about another member's safety or wellbeing? Flag your concerns with us. 
    Want to give us feedback? Complete our feedback form now.
    Opinions are my own, such as mashed potato being bad.
  • rachaelT84
    rachaelT84 Community member Posts: 4 Listener
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    Yes I've held off for 5 years but got to a stage now where I am finally admitting that I'm I'll. An thank you I spoke to DWP today an they explained how to do mandatory so I am guessing that my feeling of rejection is correct. I've contacted hospital for my evidence an will be contacting surgery manager Tomo for more information into what meds I have been prescribed even though I carnt take. Explained to DWP reason behind not taking them an why I only take 1 of the 1 I do as someone died recently with same condition due to heart an I have had to go AE multiple times due to feeling I'm having heart attack. My anexity with tablets is through roof I'm terrified to take them ....thanks for support 
  • poppy123456
    poppy123456 Community member Posts: 56,990 Disability Gamechanger
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    Try not to concentrate too much on the assessment report because that isn't going to get you a PIP award. If there's any obvious errors then it's ok to mention a couple of those but then put it to one side and forget about it. You don't need to take any medication to be awarded PIP.

    What you need to do is concentrate on those real world examples i mentioned above as they are the most important part of the MR request, if you didn't do that when filling out the form.


    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: 16,154 Disability Gamechanger
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    Hi @rachaelT84 - & a belated 'welcome to the community.' I've been meaning to get in touch as my family has been affected by Chiari 1 Malformation, in our case associated with Ehlers-Danlos Syndrome.
    I hope you may take onboard the advice poppy has given above, as well as read the link she has given. I just wanted to add my personal experience of going through the PIP process..... I didn't even mention Chiari 1 Malformation with my assessment as I'd previously realised that even some Drs had very little understanding about it, nor had I seen a specialist for years, & don't get me going on inaccurate Drs letters! 
    I hope this also shows that medical evidence isn't needed; it's your evidence that's the most important.
    Please don't take to heart the often repeated phrases used in PIP reports; I appreciate they can feel hurtful, but remember these are just 'cut & paste' phrases used in many reports.
    Do give those detailed real world examples for each applicable PIP descriptor with your Mandatory Reconsideration.
  • rachaelT84
    rachaelT84 Community member Posts: 4 Listener
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    Thank you for help. I just feel deflated it's took me almost 5 years of trying to manage but I have finally got to a stage that support would be helpful. Sorry to hear about your family members also I hope they are ok. So many more problems with chiari it's not just headaches as they seem to think. It effects everyone differently 
  • chiarieds
    chiarieds Community member Posts: 16,154 Disability Gamechanger
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    Good to hear from you @rachaelT84 - & thank you for your good wishes. I don't have the typical Chiari headaches, rather am in pain the moment I'm upright due to the combination of Chiari 1 Malformation & Ehlers-Danlos Syndrome. As you say, we're all affected differently.
    A great resource about Chiari 1 Malformation is the American Syringomyelia & Chiari Alliance Project (I do feel these USA Drs are about a decade ahead of ours). They have videos of past conferences for patients that you can see here: https://asap.org/conferences/past-conference/

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