Lies that get told by health care proffessional at assessment that are beleived - Page 3 — Scope | Disability forum
Please read our updated community house rules and community guidelines.

Lies that get told by health care proffessional at assessment that are beleived

13»

Comments

  • paffuto10
    paffuto10 Community member Posts: 388 Pioneering
    Thanks @Chloe_Scope

    Not sure if I had a little telling off there or not?  :p 

    Anyway, I would like to apologise if I offended anyone including @dolfrog the other day, with my rather stroppy post! 

    It sure is a very emotive subject. 

    Wishing well to you all x
  • dolfrog
    dolfrog Community member Posts: 441 Pioneering
    edited November 2019
    chiarieds said:
    I'm unsure where to post this, but as many comments about auditory processing disorder have been mentioned on this thread, I'll mention it here. @Adrian_Scope the following resource may help others, as it explains in layman's terms about this disorder, as well as providing links to some research, etc: https://apdsupportuk.yolasite.com/ Perhaps this may help @Ami2301 too. There does actually appear to be some considerable knowledge about this disorder widely available on the internet, including an NHS link: https://www.nhs.uk/conditions/auditory-processing-disorder/
    @dolfrog - I'm very pleased to read you have received the benefits you need. My apologies for misunderstanding. I thought you needed help with some benefits.
    Sadly most people here know more about their disorder than their doctors, as they are the ones experiencing the problems they face, so you are not alone.
    Perhaps the first website I mention may help you.....it does emphasize that everyone is unique in the problems they face, as is true with most disorders.


    Hi @chiarieds
    I am currently in the move from DLA to PIPs, which is a government change in how they wish to reduce the benefits they provide for the disabled. Currently my PIP tribunal has been adjourned so that the Judge can begin to read some of the research papers regarding my type of Auditory Processing Disorder. As I explain at the initial Tribunal hearing the DWP report was pure disability discrimination.

    Unfortunately the web sites you mentioned have a very limited description of APD and only cover one of the 4 types of APD,
    And this was one of the reasons that APDUK was wound up back in 2014. The web sites you mentioned do not include information regarding my type of auditory processing disorder. They both describe the Speech in noise type of APD which is the only type which research has demonstrated to benefit from a specific form of technology a Frequency Modulation (FM) System, where a speaker has a microphone ans the listener has a speaker placed in front of them to reduce the problems with low levels of background noise.

    I have the Temporal type of APD, the brain having problems processing the gaps between sounds which can include the gaps between words in rapid speech. One of the diagnostic tests is the Random Gap Detection Test which attempts to measure the size of gap between sounds an individual can process, when i did the test back in 2003 (I was the first adult in the UK to be diagnosed as having APD in 2003)  it did not include a gap large enough for me to process. Which is explain why I am dyslexic, as I am not able to process the gaps between the sounds that make up a word, and i am not able to use phonics, and not able to phonetically sound out new words from text, the written word.
    The person who run the web site you mentioned does not want to recognise my type of APD as it not the type of APD that their family members have and there were some other personal issues and that was why APDUK relaunch in 2014.

    Prof David Moore who lead the UK Medical Research Councils 5 Auditory Processing Disorder research program 2004-2009 and currently works at a research hospital in the USA agrees which the Four Types of APD, and is currently adviser to the BSA APD committee. If you want to find out more regarding the 4 types you could have a look at "The Four Types of Auditory Processing Disorder" you may have to join Zotero to access the research paper collections, which is free to join. (unfortunately free access CiteULIke where I used to keep my research paper collections closed down in March this year and i had to find an alternative research paper compilation site)
    And there is also "Some International Auditory Processing Disorder Research Papers" where the research papers are listed country by country

    Currently Germany is leading international APD research, the UK research stalled around 2012 due to inter medical profession politics. As the real issues would require some professions to be retrained as APD is an underlying cause of some the issues they may consider as a condition rather than a symptom of one or more of the types of APD. 


  • poppy123456
    poppy123456 Community member Posts: 53,338 Disability Gamechanger
    @dolfrog Internet print outs about a condition are not classed as evidence for a PIP claim. What the Tribunal will want to know is how you're affected by your conditions against the PIP descriptors. They won't be interested in the lies/contradictions that may have been told in the report and they won't appreciate you mentioning any of those.

    Did you send evidence about how you're affected (not internet print outs) and give some real life examples? Do you have representation for this Tribunal?
    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.
  • dolfrog
    dolfrog Community member Posts: 441 Pioneering
    Most of the research regarding Auditory Processing Disorder has focused on children.
    An Australian psychologist Damien Howard has a particular interest in APD as it is a problem for the native populations of the Pacific islands including Aboriginal, Maori, Pacific Island, Inuit, American Indian. He ran an online Adult APD research program initially based on the members of my Yahoo Adult APD group the OldAPDs. The articles resulting from this research program which last over 2 years, are "Controlling the Chaos" and "The Trouble with Strangers" which can be downloaded from the articles page of his web site Ear Troubles
    Ear Troubles the articles page
  • poppy123456
    poppy123456 Community member Posts: 53,338 Disability Gamechanger
    That doesn't answer my questions..
    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: 16,007 Disability Gamechanger
    Hi @dolfrog - Like yourself with a lifelong award of DLA, I had to apply for PIP. You may remember I also have a genetic disorder. I had had to go to a Tribunal to get my DLA as at the time I had no diagnosis (although like yourself I had researched, and, in my case, believed I knew what I had, but needed a medical opinion to get this confirmed).
    I thought PIP in theory sounded better, as it is about your disability, rather than a diagnosis. This sadly seems to be where some people have difficulty; they concentrate upon their diagnosis, rather than the difficulties they may face in their daily living, or mobility activities.
    May I ask you to look at the following link, which may help you. It is from a DWP guide for the assessment providers, which shows where it is thought a person may be awarded points, and will also be relevant to your Tribunal, if you have not managed to describe how your APD impacts on your life, rather than just trying to explain your diagnosis.
    From the link below, I imagine 'Activity 7' about communication may probably be the first relevant part, then please read further. See: https://www.gov.uk/government/publications/personal-independence-payment-assessment-guide-for-assessment-providers/pip-assessment-guide-part-2-the-assessment-criteria#daily-living-activities
    Please also be guided by @poppy123456 - she has considerable knowledge about PIP, as well as other benefits. As she has also tried to say, PIP is about how your disability 'affects' you, not your diagnosis, nor your links to a medical database.


  • dolfrog
    dolfrog Community member Posts: 441 Pioneering
    edited November 2019
    Hi @chiarieds
    I have been describing how my disability affects my daily life for the last 20 years including when I was helping to run the  UK Auditory Processing Disorder support organisation APDUK, which the UK medical research council asked me to set up.
    due to th communication nature of my APD issues ,all of my benefit claim forms have been written by our local CAB, as can at times explain how my APD affects me on a day to day basis.
    The problem is that the assessors and the so called descission makers have no understanding of what my disability is, and from my experience they do not want to begin to understand the complex nature of my disability, This not just about me, all of my family, our three sons and my wife also have a clinical diagnosis of APD, and we all have different types of APD, different sets of similar  day to day problems. 
    From what i have seen poppy123456 has no interest in try to understand my disability, not provide any support.

    And going to government web sites is a waste of time. I need help face to face like from the CA, where another person can listen to my discription of my issues which they can then describe in the terminology used by the government agencies such as the  DWP, and their inadequately trained staff.  


  • poppy123456
    poppy123456 Community member Posts: 53,338 Disability Gamechanger
    edited November 2019
    @dolfrog i find that comment very rude! The advice i give others is voluntary and i have multiple health conditions myself, yet i still advise others. I do not have time to sit and read through multiple links to try to understand what your condition is and i don't intend to do that either. That is not what advice forums are for. You said yourself that you need face to face advice, i'm afraid that's impossible on any internet forum.

    Most of the time when i ask you a question, you chose to ignore it and then continue to post links about APD but those links won't answer the questions i ask.

    As i've previously advised on another thread there is no terminology that should be used when filling out any 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.
  • Adrian_Scope
    Adrian_Scope Posts: 10,821 Scope online community team
    Closed pending review.
    Community Manager
    Scope
This discussion has been closed.

Brightness

Do you need advice on your energy costs?


Scope’s Disability Energy Support service is open to any disabled household in England or Wales in which one or more disabled people live. You can get free advice from an expert adviser on managing energy debt, switching tariffs, contacting your supplier and more. Find out more information by visiting our
Disability Energy Support webpage.