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Lies that get told by health care proffessional at assessment that are beleived
CL1
Member Posts: 1 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
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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
Scope
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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
SCOPE Volunteer Award Engaging Communities 2019
Mental Health advice, guidance and information to all members
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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
SCOPE Volunteer Award Engaging Communities 2019
Mental Health advice, guidance and information to all members
Nutrition, Diet, Wellbeing, Addiction.
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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.
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
SCOPE Volunteer Award Engaging Communities 2019
Mental Health advice, guidance and information to all members
Nutrition, Diet, Wellbeing, Addiction.
Recipes
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
@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?
Scope
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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
SCOPE Volunteer Award Engaging Communities 2019
Mental Health advice, guidance and information to all members
Nutrition, Diet, Wellbeing, Addiction.
Recipes
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
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.
@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.
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.
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. .
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.
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.
.
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.
Unfortunately it seems that Scope do not like to expose the corrupt nature of the DWP.
I think people are genuinely trying to help and understand your frustration and predicament.
Have to say though, I think it's a bit unfair and unrealistic when you and some other posters expect a national charity like Scope to take part in "exposing" ANYONE!!
They could possibly get closed down and then where would we be?
I appreciate and admire the fact that Scope Online gives us the opportunity to air our grievances, discuss and obtain advice on this forum.
Whatever Scope's opinion is on how your condition is handled or the whole DWP fiasco or anything, it's completely understandable that they just cannot give their opinion on corruption. It would be irresponsible.
There's plenty of posters on here that will agree with your opinion (myself included) but I feel we can't expect Scope to join in.
They are a charity with advisors, not some rebel group trying to expose government.
If you want to join an anti government, anti DWP group, there are plenty on the Internet.
I sincerely hope you can obtain more help with your condition and hope you do continue to air your issues on here but please stop trying to get a charity to join in.
It's unfair and unfeasible!
Please note: I do not work for DWP or Scope!
In fact, I am mostly housebound with severely autistic son (consistently misunderstood) and daughter with borderline personality disorder and fibro (consistently misunderstood)
Just struggling along same as everybody.
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.
Scope
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Not sure if I had a little telling off there or not?
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
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.
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
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.
Scope
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