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

CL1CL1 Posts: 1Member Listener
Recently had assessment,which was inaccurate,lies told by hcp,distorted facts,and downplayed,illnesses wich include astma,copd,epilepsy(grand mal)ischeamic heart disease(diagnosed after heart attack at age 45)now 51,mental health problems,anxiety,connective tissue disease(which is in both shoulders but mainly left and is really painful unable to move left arm up without bad pain)and has been placed in the work related activity group,after being in the support group for years,even after a supposed mandatory reconsideration,i will appeal but im at the end of my tether with these people,the hcp is being beleived

Replies

  • pollyanna1052pollyanna1052 Posts: 1,308Member Disability Gamechanger
    sadly we see a lot of this and Scope advisers say telling the assessors and reporting them does our claims no good.
    If you`ve got your report, follow each one and give an example of what happened when you tried to do that activity.

    You are going to take it to tribunal, aren't you?

    They often..... 70% ish...get turned around in your favour.
    Listing diagnoses doesn't help.....saying HOW they affect you does

  • zakbloodzakblood Posts: 419Member Pioneering
    welcome to the forum and good look at the MR, or Tribunal if that part fails
  • poppy123456poppy123456 Posts: 14,933Community champion Disability Gamechanger
    Hi,

    You need to explain how your conditions affect you with as much detail as possible. I know the lies/contradictions in the report are very upsetting but arguing with that will not get you back into the Support Group. Take a look at the support group descriptors here https://www.benefitsandwork.co.uk/employment-and-support-allowance/esa-glossary/1353-support-group-descriptors

    Once you've taken a look then you can see for yourself which one may apply to you. The Support Group descriptors are very specific and none may apply to you. What may apply to you is regulation 35 which is the main route into the support group for a lot of people. This is explained here, you'll need to scroll quite far down the link to find it. https://cpag.org.uk/welfare-rights/resources/article/making-exception

    When requesting the MR you need to concentrate on why you think you should be in the support group. Remember it's about the work you can do, rather that the work you can't do and this is what DWP and the Tribunal will be looking at.

    Only 18% of MR decisions change so it's very likely you'll have to take it to Tribunal.


  • Dotty123Dotty123 Posts: 472Member Pioneering
    They permanently lie I got took off sg and told I can work with no hands asthma diabetes there not suitable peaple for the job good luck 
  • poppy123456poppy123456 Posts: 14,933Community champion Disability Gamechanger
    Dotty123 said:
    They permanently lie I got took off sg and told I can work with no hands asthma diabetes there not suitable peaple for the job good luck 
    That's not exactly true, although yes a lot of people receive bad reports. Alot of people are also placed successfully into the support group without any problems at all and lots of people receive good reports, we just rarely hear the good stories.
  • wilkowilko Posts: 1,919Member Disability Gamechanger
    Hello everyone, to many people, claiments think that because they have an illness, diagnosis they automatically are eligible for ESA SG or PIP, without looking at the descriptiors for each benefit and how the descriptiors impact on their lives in the daily living activities and mobility or the workplace situation. Then when they get the assessment report they start to complain that the HP lied, never took note of their health problems, ect. The HPs are there to avaluate your abilities to preform the descriptiors for each benefit in a safe, repeatable and timely manner. There are more successful awards that don't make the good news stories only the bad ones. 
  • zakbloodzakblood Posts: 419Member Pioneering
    not saying i agree or disagree tbh, but on the part of HP, funny how the tribunals don't agree and % wise over turn 70% of those same HP's, so something wrong, maybe it's the name, as HP stands for many things, but professionals isn't one of them, as if the over turn rate was 10% i'd agree in the name, but it isn't, so professional there not, that is for sure,...
  • Chloe_ScopeChloe_Scope Posts: 5,837Administrator Scope community team
    Welcome to the community @CL1, great to have you here. How are you doing today? If there is anything else we can help with or you want further clarification then please do let us know. :)
    Chloe
    Online Community Officer
  • wilkowilko Posts: 1,919Member Disability Gamechanger
    Looks like both poppy 123456 and I hit a raw nerve with our comments on this subject, marking them as spam?? Sometimes the truth has to be told and some people don’t like it.
  • dolfrogdolfrog Posts: 347Member Pioneering
    edited November 1
    wilko said:
    Looks like both poppy 123456 and I hit a raw nerve with our comments on this subject, marking them as spam?? Sometimes the truth has to be told and some people don’t like it.
    The problem is that you do not want to help those who have disabilities that you do not want to understand, it could be called disability discrimination. 

  • poppy123456poppy123456 Posts: 14,933Community champion Disability Gamechanger

    That's not exactly true, although yes a lot of people receive bad reports. Alot of people are also placed successfully into the support group without any problems at all and lots of people receive good reports, we just rarely hear the good stories.
    I'm quoting my own comment again here because i'm not sure why it's been flagged. I really don't see anything bad in the comment i made, just speaking the truth. There are a lot of people who are successfully placed into one of the groups end of story.

    If you don't like my comments then the ignore feature works very well, just add me to your ignore list and this way you won't see my truthful comments. The advice i give is always honest and truthful. :)
  • poppy123456poppy123456 Posts: 14,933Community champion Disability Gamechanger
    dolfrog said:
    wilko said:
    Looks like both poppy 123456 and I hit a raw nerve with our comments on this subject, marking them as spam?? Sometimes the truth has to be told and some people don’t like it.
    The problem is that you do not want to help those who have disabilities that you do not want to understand, it could be called disability discrimination. 

    @dolfrog may i ask why you think that wilko is discriminating people here? I certainly don't see anything of the sort here.

    Again, i'd advise you to use the ignore feature if you don't like the comments that are being made.
  • thespicemanthespiceman Posts: 5,309Community champion Disability Gamechanger
    edited November 1
    Hello @CL1   Pleased to meet you welcome.

    Thank you for joining and sharing. Sorry to hear what has happened.

    I am one of the team of community champions.  We guide, advise on new members who join.

    Please if I can suggest with any benefits whether form filling in or an assessment. Please get some support or help or advice.

    You mentioned your mental health.  I used Mental Health charities . Get floating support or an outreach worker.  Will help you with any benefit problems and also attendance at any interviews assessments.

    Advice on your wellbeing and anything else you are coping with.

    Do take clientele with additional disabilities or problems . As well as Mental health .

    Used this one last time.

    https://www.richmondfellowship.org.uk.

    Might not be in all areas sorry to say this.

    You could use  this one if not in your area.

     https://www.mind.org.uk.

    You could speak to CAB for any further consultation.  Good with advice, guidance form filling in.

    If your not happy with any report complain to your local MP. Many members have done this successfully.

    Please if I can help with anything. Additional support, organisations or associations connected with any of your conditions or illness please get in touch.

    Be happy to be supportive. Do have compassion and the empathy.

    Pleasure to meet you.

    Please take care.

    @thespiceman
  • thespicemanthespiceman Posts: 5,309Community champion Disability Gamechanger
    Hello @dolfrog   Please can I say we do want to help you and we do understand.

    We have the compassion, the time the energy the empathy and am here every day.

    I have and do offer a lot to those members struggling have care and concern.

    I have tried to be supportive offer a lot of information and advice, guidance.  To those who could be beneficial to their wellbeing.

    I am an old fashioned gentleman a Christian do have sensitivity to every ones needs, problems and issues.

    I have walked a mile in my shoes of those who had the problems and difficulties, the hardship.

    This is what I bring to the forum.  I am proud of what I do and enjoy my time helping the community.

    I do get emotive if I can not help the member concerned who very much is not listening or wanting to know anything I am sending to them.

    Do have a heart.

    I hope you understand that.

    Please take care.

    @thespiceman




  • WhileIBreathIHopeWhileIBreathIHope Posts: 216Member - under moderation Pioneering
  • dolfrogdolfrog Posts: 347Member Pioneering
    edited November 2
    Hello @dolfrog   Please can I say we do want to help you and we do understand.

    We have the compassion, the time the energy the empathy and am here every day.

    I have and do offer a lot to those members struggling have care and concern.

    I have tried to be supportive offer a lot of information and advice, guidance.  To those who could be beneficial to their wellbeing.

    I am an old fashioned gentleman a Christian do have sensitivity to every ones needs, problems and issues.

    I have walked a mile in my shoes of those who had the problems and difficulties, the hardship.

    This is what I bring to the forum.  I am proud of what I do and enjoy my time helping the community.

    I do get emotive if I can not help the member concerned who very much is not listening or wanting to know anything I am sending to them.

    Do have a heart.

    I hope you understand that.

    Please take care.

    @thespiceman




    Hi @thespiceman
    I have a complex communication disability, which is not easy to explain, I have had it all of my life, as it is a genetic issue. i always knew I was different and experiences bullying and other discrimination from a very young age in the education system and in the workplace. Although my father had the same issues, due to social stigma they were related to a head injury he experienced during world War 2, even though his younger brother my uncle also had similar issues.
     It was only when trying to help advocate for our children back in the late 1990s that recent research here in the UK was beginning investigating the the condition I have been living with all of my life. 
    when I was eventual assessed and diagnosed I was described as a "Worst Case Scenario" but after the diagnosis i understood the nature of my limitations and more importantly the alternative compensating skills and abilities I may be best able to use to work around my limitations. running coping strategies in the working memory can be very tiring and exhausting, and may not be possible when experiencing stress and anxiety.
    I have problems processing unfamiliar words in both speech and the written word, and unfamiliar language structures which can include forms and documentation created and used by others. Which is why our family need help from say the CAB to fill in benefit forms and or job application forms etc.
    So when others continually use which for me is unfamiliar terminology , for me it is a form of discrimination as they are not using alternative ways to explain what they are trying to say, they continue to use terminology I do not fully understand, and they do not use alternative ways to explain things in a way that I may better understand.  
    There is a great deal more to my disability but those are the main issues here. 


  • thespicemanthespiceman Posts: 5,309Community champion Disability Gamechanger
    Hello @dolfrog   Please can I just say I do know all of this. I am aware of your disability .

    Did you know I am the same . Have a genetic condition effects hearing, hands, feet, eyesight and much more.

    Every time I have a diagnosis find some thing new.

    Recently went to Dentist found teeth growing in the roof of my mouth. See am I concerned am I worried just get on with my life.

    When some one like a Parent hides your true disability.  After twenty years ongoing.  The reality sets in. What is this what have I got.

    Thalidomide something else. Imagine your going to Court to find out because your family are hiding the truth.

    Think of this.  Your in one corner .There in another .  No speaking and the one Parent trying to sue me in Court for slander and everything. 

    Understand this not easy to deal with. Isolated family do not want to know. Yet they could be effected and my Mother far as I know has not told them.

    Found out and now be able to deal with every thing, not before being an alcoholic due to. Sorted that out but left with mental health.

    Also do have problems very much communicating struggling to hear those. Can not wear hearing aids due to ears not being able to fit aids, small ones.

    Uncomfortable. Recently after addiction made it worse.  My hearing loss.

    Have subtitles on Tv have Radio on and music losing that to hear as I getting older.

    All is a pain every day . 

    Yet I cope, deal with my issues and use my knowledge my own history to help others.

    Just thought mention this.

    I am always trying to be supportive of every one. Get disappointed from those who wish to be critical of those trying to be kind, have sensitivity and use their time to be helping.

    One other point may I add. There are others on this community who have worse than you and me with communication problems. Yes there are. There amazing, wonderful members of our community do a lot for the forum.

    They are like me move on and cope brilliantly as they would.

    Wish you well.

    @thespiceman
  • dolfrogdolfrog Posts: 347Member Pioneering
    Hi @thespiceman
    I am aware that many others can have many more issues and more severe communication problems then me. And that they may all have their own various ways of working around their limitations which all need to understand. I spent sometime some years ago helping to edit, providing the supporting research, some invisible disability related Wikipedia articles

    Sorry to about your hearing loss, which can be a real problem, especially if you are not best able to use hearing aids,

    I have perfect hearing my problem is my brain having problems processing, understanding , and remembering the sounds that my ears hear. And this causes further problems with any form of notation of sound based communication such as the written word, which explains my dyslexia symptom.

    So this  is more about how can we best provide support and help for those who have the various types of communication disabilities.

    How best to provide information especially when trying to explain more complicated information, especially when trying to help explain the nature of their disabilities and how them may best able to work around their personal limitations to others.
    The problem tends to be that the so called others do not want to know about our differences, our different limitations, and more importantly our different ways of working around the limitations our various types of disability may impose. 

    So for me and many others who may share mine and other communication disabilities require others who try to explain complex information, such as Benefit Forms, thye need to explain the various issues in various different ways so that others are best able to understand these complex issues using the communication skills that they are best able to use to work around their communication limitations. Some use the exact same complex explanations using unfamiliar terminology and do not bother to try to explain the issues using language that those who have a communication disability will be better able to understand, So from reading some of the so called advice posts from some, they could be copying and pasting the same complex explanation each time which many of us fail to fully understand..They never attempt to explaln complex issues in lay terms so that we can all understand what they are trying to say.  

    As you say I am only one example and many others have worse communication problems than me, so the question then becomes "if i have problems understanding these issues, how do those who have more severe problems even begin to understand these issues and explanations. 
    As I mentioned above I was a Wikipedia editor, and as such you get a Wikipedia User page, on my user page I have listed research paper collections related to a range of invisible disabilities including various types of hearing loss which you may find of some interest My Wikipedia User page Invisible disability sub section

  • Adrian_ScopeAdrian_Scope Posts: 4,390Administrator Scope community team
    Could I please remind members not to use the 'flag as spam' reporting function for posts they don't agree with. Its primary function is to report spam posts. If you're concerned about a post or poster you can email the community team on [email protected] or if a post contains content you feel breaches our community guidelines, please use the 'flag and report' rather than 'flag as spam'. 

    @dolfrog, I'm really sorry you feel discriminated against. If you (or anyone) ever asks for advice and don't understand the response, I hope you feel like you can say so. I'm sure all of us will be willing to try and explain it differently. Sadly, the benefits system is complex and can be very difficult to explain. 

    @CL1, I'm sorry to hear your recent reassessment and MR weren't successful and you feel that the assessors report wasn't accurate. Have you submitted your appeal? 

    Senior Online Community Officer
    Scope
  • dolfrogdolfrog Posts: 347Member Pioneering
    edited November 4
  • thespicemanthespiceman Posts: 5,309Community champion Disability Gamechanger
    Hello @dolfrog   There are courses on line to use for benefit training.

    I have done some of them and very good. Useful to do and know.

    Often to those wish to be come a benefit advisor but they do take on claimants wishing to boost their knowledge.

    I was one such course run by a training company connected with my JSA at the time.

    The room was full of members of our Community. Mainly Learning difficulties and those with reading, writing problems. Other disabilities.

    Very informative, staff trained in dealing with our Community.

    Please have a look on line. May I add speak to CAB, they also do courses as well .  Form filling in and much more.

    Hope that helps.

    Learnt a lot.

    One other information always get help with benefit and forms whether you can do them or not.

    I have been on benefits a long time never once filled in a form always got Team my support or CAB or health professionals.

    I consider myself a smart gent but even I get confused all the time.

    @thespiceman




  • chiariedschiarieds Posts: 664Member Pioneering
    Hi @dolfrog Sadly, I don't feel there would be time for the people that offer their help here to ever completely understand everyone's disabilities. They are just doing the best that they can, & I don't think we, as a community, can ask for anything more.
    May I instead make a suggestion. Perhaps you could list the words, & that's all they are, not really what I personally would call 'terminology,' that you're struggling to understand, so that you may be better helped, thank you.
  • dolfrogdolfrog Posts: 347Member Pioneering
    Hello @dolfrog   There are courses on line to use for benefit training.

    I have done some of them and very good. Useful to do and know.

    Often to those wish to be come a benefit advisor but they do take on claimants wishing to boost their knowledge.

    I was one such course run by a training company connected with my JSA at the time.

    The room was full of members of our Community. Mainly Learning difficulties and those with reading, writing problems. Other disabilities.

    Very informative, staff trained in dealing with our Community.

    Please have a look on line. May I add speak to CAB, they also do courses as well .  Form filling in and much more.

    Hope that helps.

    Learnt a lot.

    One other information always get help with benefit and forms whether you can do them or not.

    I have been on benefits a long time never once filled in a form always got Team my support or CAB or health professionals.

    I consider myself a smart gent but even I get confused all the time.

    @thespiceman




    I have a disability that is hardly explained properly by the so called UK medical professionals (audiologists, speech and language, psychologists) who who should be trained and qualified to explain fail to want know about my sound processing disability and the related problems it can cause. Some of the reasons are inter medical profession politics and medical career marketing.
    One of the symptoms of my auditory processing disorder is developmental dyslexia (dyslexia is a shared symptom of auditory processing , visual processing and attention disorders).
    I was the first adult in the UK to be clinically diagnosed as having auditory processing disorder 2003, to help the medical research council get government funding for a  5 year auditory processing disorder research program. The needed some one to create and run a UK auditory processing disorder support organisation. APDUK was set up 2002-2003 and the medical research council got their funding in 2004.
    Unfortunately I seem to still know more about my disability than the so called medical professionals who should be clinically diagnosing  it and providing the life long support as their is no cure.(audiologists, speech and language, psychologists)
    This makes explaining my disability to others even more difficult, as sue to my own language issues I use international research papers to explain my disability, which for me is easier, but not for most others.
    this makes explaining my disability and the day to day problems it poses even more difficult to those who have no idea of the nature of my disability but claim to be qualified to make decisions regarding support and benefits.
    It feels like I am always surrounded by professional idiots.

    Thank you for trying to understand

  • dolfrogdolfrog Posts: 347Member Pioneering
    edited November 9
    chiarieds said:
    Hi @dolfrog Sadly, I don't feel there would be time for the people that offer their help here to ever completely understand everyone's disabilities. They are just doing the best that they can, & I don't think we, as a community, can ask for anything more.
    May I instead make a suggestion. Perhaps you could list the words, & that's all they are, not really what I personally would call 'terminology,' that you're struggling to understand, so that you may be better helped, thank you.
    Unfortunately it is not just about understanding words, i wish it was.
    I have word recall problems when talking to others or when writing and or typing.
    And it can take days, weeks, even months sometimes to remember the word again. 
    Which means I need to have understanding of the big picture so that i am able to explain a single topic in multiple ways, so that i can work around my communication limitations. 

    And each time i start to learn about a new topic i may need to completely change my language coping strategies to both help me understand the topic, and enable me to explain the topic so that others are best able to understand what i am saying.
    This can be very complex, time consuming , and exhausting.
    And I am not always aware of the problems i may experience regarding a specific topic until it is too late and I have failed to explain a topic in the way I need to so that others understand what i am trying to describe and explain. 
    I also have problems processing what i hear and I can easily miss understand what others have said or the meaning of the questions they have asked.


  • chiariedschiarieds Posts: 664Member Pioneering
    edited November 9

    @dolfrog

    Thank you, that does explain more about the complicated problems you have.

    In my opinion, the more anyone with difficulties explains, the more we can learn, which I hope means we can try and help, and understand each other better.

    Please know, here of all places, no-one is discriminating against you, nor intentionally excluding you by using words that are difficult for you, as we did not know. Those who have offered you their help do so from their personal experiences, or from the knowledge they have gained, hoping to help others. It seems to me that people in this community often share some common problems, rather than have any diffferences.

    I will write more later, if I can.


  • dolfrogdolfrog Posts: 347Member Pioneering
    chiarieds said:

    @dolfrog

    Thank you, that does explain more about the complicated problems you have.

    In my opinion, the more anyone with difficulties explains, the more we can learn, which I hope means we can try and help, and understand each other better.

    Please know, here of all places, no-one is discriminating against you, nor intentionally excluding you by using words that are difficult for you, as we did not know. Those who have offered you their help do so from their personal experiences, or from the knowledge they have gained, hoping to help others. It seems to me that people in this community often share some common problems, rather than have any diffferences.

    I will write more later, if I can.


    @Adrian_Scope 

    If the UK medical professionals , audiologists, speech and language, and psychologists, were adequately train ed and qualified regarding the 4 types of Auditory Processing Disorder, and were able to explain these complex issues in lay mans terms , as they should, I would not have to go into too much deatila as the to the complex nature of  my life long disability, which I sahre with all of my family, 3 sons, and my wife, and 60% of those identified  as having the dyslexia symptom. 
    So the problem is the failure of these so called medical professionals to be adequately trained and qualifed and failing to keep up to date with international research of the last few decades. This appears to include those who are Scope advisers on auditory and speech and language issues. 
    As I said before after helping the UK medical research council regarding a 5 year auditory processing disorder research program, I am still surrounded by professional idiots, who have no idea as to what auditory processing disorder is and completely failing to explain to others the day to day nature of my disability. 
  • chiariedschiarieds Posts: 664Member Pioneering
    Hi @dolfrog, I was just about to write to you again. May I first say that anyone who has spoken to you from the Scope team, & other people here, have no advisors on auditory, speech and language problems. They are just people who do their best to understand and offer help and guidance. Some are people who volunteer trying to help as, and when they can.
  • chiariedschiarieds Posts: 664Member Pioneering
    Hi @dolfrog - What I was going to ask next: Are you, or any of your family, needing to apply for a Benefit? If any of you are, which one is it?
  • dolfrogdolfrog Posts: 347Member Pioneering
    edited November 10
    Hi @chiarieds

    Probably me not explaining things too well.

    My point was that if the so called experts were to explain in detail the nature of my disability, then others would have a  better understanding of the problems that I and many others can experience on a day to day basis especially relating to how we may have some problems with both verbal and written/typed communication.
     
    I did help run the support organisation for over 10 years to help those who share my disability, the problem now is that I now need help from others which means that they may need to learn about the nature of my disability, which may not be easy. .  
  • chiariedschiarieds Posts: 664Member Pioneering
    Hi @dolfrog - Do not worry, I am a very patient person and just trying to find out what help you might need. So, what sort of help do you need from others?
  • poppy123456poppy123456 Posts: 14,933Community champion Disability Gamechanger
    @dolfrog do you need help with ESA? I'm just wondering because that's where you're posting your comments. If you do need help with this benefit then i'm sure someone will advise you further.
  • dolfrogdolfrog Posts: 347Member Pioneering
    chiarieds said:
    Hi @dolfrog - Do not worry, I am a very patient person and just trying to find out what help you might need. So, what sort of help do you need from others?
    This may sound daft, but first i need some understanding that my disability exists, and is the main underlying cognitive cause of developmental dyslexia. 

    I need all 3 UK Audiology professional bodies to have a full understanding of 4 types of Auditory Processing Disorder, and for the so called multi disciple support team medical professionals - Psychologists, and Speech and :Language - to understand the complexities of auditory processing disorders so that they are able to provide the life long support required.

    This will help educate those who work for government agencies such as the DWP with regard to providing benefits and the support may require. It may also help overcome the lack of support from UK employers to provide the various types of accommodations many require in the work place.

    As I have mentioned before i currently feel surrounded by professional idiots only interested in hiding their ignorance, and marketing their egos.
  • dolfrogdolfrog Posts: 347Member Pioneering
    chiarieds said:
    Hi @dolfrog - What I was going to ask next: Are you, or any of your family, needing to apply for a Benefit? If any of you are, which one is it? 
    Some years back I won a tribunal to get Disability Living Allowance (DLA) on a life long basis as I have a life long disability.

    The problem is the corrupt government need to reduce the amount of benefits they payout, and the bogus change from DLA to PIP.
    Those who currently assess the new system have no idea regarding the nature of my complex disability, and our current experience from the DWP has been pure disability discrimination. 

    Unfortunately it seems that Scope do not like to expose the corrupt nature of the DWP.
    .
  • dolfrogdolfrog Posts: 347Member Pioneering
    edited November 10
    @dolfrog do you need help with ESA? I'm just wondering because that's where you're posting your comments. If you do need help with this benefit then i'm sure someone will advise you further.
    Thank you for you reply
    I have already won my tribunal regarding ESA
    The local Job Centre  Work Coach told me that should be claiming ESA rather than Job Seekers Allowance, after 10 years of applying for jobs and getting no interviews, as employers do not want to make the accommodations i may require as I can only do things my way due the nature of my disability.
  • poppy123456poppy123456 Posts: 14,933Community champion Disability Gamechanger
    dolfrog said:

    Those who currently assess the new system have no idea regarding the nature of my complex disability, and our current experience from the DWP has been pure disability discrimination. 

    Unfortunately it seems that Scope do not like to expose the corrupt nature of the DWP.
    .
    It's the claimants responsibility to give as much detail about how their conditions affect them and their responsibility to prove they qualify.
  • dolfrogdolfrog Posts: 347Member Pioneering
    dolfrog said:

    Those who currently assess the new system have no idea regarding the nature of my complex disability, and our current experience from the DWP has been pure disability discrimination. 

    Unfortunately it seems that Scope do not like to expose the corrupt nature of the DWP.
    .
    It's the claimants responsibility to give as much detail about how their conditions affect them and their responsibility to prove they qualify.
    Unfortunately some assessors and decision makers do not want to listen.
  • chiariedschiarieds Posts: 664Member Pioneering
    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.


  • Chloe_ScopeChloe_Scope Posts: 5,837Administrator Scope community team
    Thank you everyone for sharing their thoughts and concerns here. The online forum is for people to discuss the things that are bothering them, and everyone is entitled to their opinion. However, the forum must remain safe and suitable for all ages.

    Scope do not agree with the benefit system and do work to make society a more equal place in general. Unfortunately, these changes are not in your face and many will go undetected to the general public.

    Scope are on your side and do not believe it to be a fair system, we hope that one day this will change. As a  charity we are not political about this and do see comments on the forum as an opinion of the member rather than a view of Scope.

    I hope this all makes sense. :)
    Chloe
    Online Community Officer
  • paffuto10paffuto10 Posts: 388Member 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
  • dolfrogdolfrog Posts: 347Member Pioneering
    edited November 16
    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. 


  • poppy123456poppy123456 Posts: 14,933Community champion 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?
  • dolfrogdolfrog Posts: 347Member 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
  • poppy123456poppy123456 Posts: 14,933Community champion Disability Gamechanger
    That doesn't answer my questions..
  • chiariedschiarieds Posts: 664Member Pioneering
    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.


  • dolfrogdolfrog Posts: 347Member Pioneering
    edited November 17
    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.  


  • poppy123456poppy123456 Posts: 14,933Community champion Disability Gamechanger
    edited November 17
    @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.
  • Adrian_ScopeAdrian_Scope Posts: 4,390Administrator Scope community team
    Closed pending review.
    Senior Online Community Officer
    Scope
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