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oodj
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are ch suffers classed as disabled?
Nov 18th, 2008 at 2:11pm  
I work in the UK and have started to have trouble at work with time off i'm taking sick due to CH. I have read on another site that CH is a disabilty so sufferers are protected by the disability discrimaination act. Has anyone had any experience of problems with work and what to do?
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Re: are ch suffers classed as disabled?
Reply #1 - Nov 19th, 2008 at 7:42am  
I noticed that you live in the UK.  You may want to contact ouch.uk and see if they can answer your question.  Good luck.
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Re: are ch suffers classed as disabled?
Reply #2 - Nov 19th, 2008 at 8:55am  
I think over here there have been a couple of us that got listed as disabled but it's only a few. Perhaps one would have to be chronic to have that designation.

I certainly hope you feel too well to be called disabled though.  Cool

Charlie
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Re: are ch suffers classed as disabled?
Reply #3 - Nov 19th, 2008 at 12:52pm  

Very few Charlie.

Here is what I found,  but of course this is in the U S and the UK probably has very different laws and rules.

    Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register -  Social Security Listing of Impairments -  A list of medical conditions for each of the major body systems, that are so severe they automatically mean that you are disabled. Cluster Headache is NOT listed, but that doesn't mean it can't be considered a disability.  It will depend on your individual circumstances and level of impairment.  It is important to gather complete documentation of your medical history of CH treatments, tests and procedures and medical documentation/certification of impairment due to the severity of your condition in advance of applying.
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Re: are ch suffers classed as disabled?
Reply #4 - Nov 19th, 2008 at 6:35pm  
There are specific details on the employment section of OUCH UK about this and a whole series of threads as well.
For UK people here reading this and it may help people in other countries as well?:

We were lucky enough to have a brave and very, very determined CH sufferer (he had ECH too, not CCH) who took a Disability discrimination claim all the way through two Employment Tribunals to the Employment Appeals Tribunal. This now stands as case law until superceded by another case to the contrary as there is no further Employment Court in the UK above this.

The EAT found that CH WAS a disability under the Disability Discrimination Act and there are many rights this gives sufferers in this country.

We are lucky to have the Test case and hope people in other countries can find a way too.

W the B
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« Last Edit: Nov 19th, 2008 at 6:36pm by pubgirl »  
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Re: are ch suffers classed as disabled?
Reply #5 - Nov 19th, 2008 at 8:44pm  
pubgirl wrote on Nov 19th, 2008 at 6:35pm:
There are specific details on the employment section of OUCH UK about this and a whole series of threads as well.
For UK people here reading this and it may help people in other countries as well?:

We were lucky enough to have a brave and very, very determined CH sufferer (he had ECH too, not CCH) who took a Disability discrimination claim all the way through two Employment Tribunals to the Employment Appeals Tribunal. This now stands as case law until superceded by another case to the contrary as there is no further Employment Court in the UK above this.

The EAT found that CH WAS a disability under the Disability Discrimination Act and there are many rights this gives sufferers in this country.

We are lucky to have the Test case and hope people in other countries can find a way too.

W the B


Good on you Wendy, for finding your way back here just in time to answer a question we could not!

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artonio7
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Re: are ch suffers classed as disabled?
Reply #6 - Nov 20th, 2008 at 1:23pm  
Quote:
pubgirl wrote on Nov 19th, 2008 at 6:35pm:
There are specific details on the employment section of OUCH UK about this and a whole series of threads as well.
For UK people here reading this and it may help people in other countries as well?:

We were lucky enough to have a brave and very, very determined CH sufferer (he had ECH too, not CCH) who took a Disability discrimination claim all the way through two Employment Tribunals to the Employment Appeals Tribunal. This now stands as case law until superceded by another case to the contrary as there is no further Employment Court in the UK above this.

The EAT found that CH WAS a disability under the Disability Discrimination Act and there are many rights this gives sufferers in this country.

We are lucky to have the Test case and hope people in other countries can find a way too.

W the B


Good on you Wendy, for finding your way back here just in time to answer a question we could not!

Smiley Kiss Smiley

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Thanks for posting the link to the OUCH U.K. site Jonny... It's a beautifully designed site and so easy to navigate. Simply BEAUTIFUL!

with warm regards,
Tony
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Re: are ch suffers classed as disabled?
Reply #7 - Nov 20th, 2008 at 4:13pm  

  OUCH-us  didn't do too badly either with it's web site. Wink


  O.U.C.H. Website Ranked #1 Cluster Headache Website

A study published Nov 13, 2007 in  "Headache - The Journal of Head and Face Pain," entitled "An Analysis of Cluster Headache Information Provided on Internet Websites" evaluated the quality of websites providing information on cluster headache to patients and doctors.  While we can't post the full text of the article here, due to copyright issues, we are proud to report that the OUCH-US website was ranked as the overall number one website for providing cluster headache information to patients and doctors. 

The abstract for the article can be found here:

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artonio7
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Re: are ch suffers classed as disabled?
Reply #8 - Nov 20th, 2008 at 4:51pm  
Linda_Howell wrote on Nov 20th, 2008 at 4:13pm:
 OUCH-us  didn't do too badly either with it's web site. Wink


 O.U.C.H. Website Ranked #1 Cluster Headache Website

A study published Nov 13, 2007 in  "Headache - The Journal of Head and Face Pain," entitled "An Analysis of Cluster Headache Information Provided on Internet Websites" evaluated the quality of websites providing information on cluster headache to patients and doctors.  While we can't post the full text of the article here, due to copyright issues, we are proud to report that the OUCH-US website was ranked as the overall number one website for providing cluster headache information to patients and doctors.  

The abstract for the article can be found here:

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register s=18005143&dopt=AbstractPlus


While it may have been given an award for the amount of information it contains, what good is the info if it's difficult or nearly impossible to navigate to?

It lacks design consistency and flow. I'm not trying to be mean, nor am I attempting to deride the efforts of those responsible,. It just sucks as far as usability goes.

with warm regards,
Tony

Modified to add:  It's a shame that a grant can not be secured and used for the design and upkeep of the site. Since it appears that OUCH US is not going to have a convention this year... one would think some of last convention's donations could be redirected towards the sites development and upkeep.

Just a thought.
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Re: are ch suffers classed as disabled?
Reply #9 - Nov 20th, 2008 at 7:42pm  
Tony,
If I'm not mistaken, the last year, the location wasn't announced until right around this time or the first of December.
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Re: are ch suffers classed as disabled?
Reply #10 - Nov 20th, 2008 at 8:07pm  
I will pass on the compliments on to those responsible, thank you for them.
Also thank you to Jonny for posting the link- am a bit numpty about those- sorry!

I think ch.com/OUCH US and OUCH UK share many, many things, not least of which is a lot of people who care very deeply about helping others and will give time, money, and emotional energy they cannot easily spare to help fellow sufferers

BUT perhaps like Shaw said a VERY long time ago "England and America are two countries divided by a common language" This became for me even more acute on here as many of you know and I think our cultures and "norms" and "voices" are often very different too and many find these "differences"uncomfortable  Cool.

This suggests to me that the websites and forums are likely to need to be profoundly different too, but not necessarily better or worse.


W
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Re: are ch suffers classed as disabled?
Reply #11 - Nov 20th, 2008 at 8:12pm  


    Thank you Wendy and Thank you Delta.   Kiss
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Re: are ch suffers classed as disabled?
Reply #12 - Nov 20th, 2008 at 8:15pm  
bet those accents on the videos sound damn funny to all of you too!  Grin Grin
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Re: are ch suffers classed as disabled?
Reply #13 - Nov 20th, 2008 at 9:03pm  
pubgirl wrote on Nov 20th, 2008 at 8:07pm:
I will pass on the compliments on to those responsible, thank you for them.
Also thank you to Jonny for posting the link- am a bit numpty about those- sorry!

I think ch.com/OUCH US and OUCH UK share many, many things, not least of which is a lot of people who care very deeply about helping others and will give time, money, and emotional energy they cannot easily spare to help fellow sufferers

BUT perhaps like Shaw said a VERY long time ago "England and America are two countries divided by a common language" This became for me even more acute on here as many of you know and I think our cultures and "norms" and "voices" are often very different too and many find these "differences"uncomfortable  Cool.

This suggests to me that the websites and forums are likely to need to be profoundly different too, but not necessarily better or worse.


W


I would not say our cultures are all that different Wendy.  Compared to what?  South Africa, China, France?  The USA is about as close as your going to get. Even within the USA we have varied cultures from East coast to West coast.  Even within England, Londoners are quite different from folks from Sheffield.  Asside from different expressions and laws I don't see much difference between the USA and the UK. 

Remember that the USA has it's roots in the UK.  We just got tired of paying rent for a house we moved out of. Wink

-P.
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Re: are ch suffers classed as disabled?
Reply #14 - Nov 20th, 2008 at 9:10pm  
Paul98 wrote on Nov 20th, 2008 at 9:03pm:
pubgirl wrote on Nov 20th, 2008 at 8:07pm:
I will pass on the compliments on to those responsible, thank you for them.
Also thank you to Jonny for posting the link- am a bit numpty about those- sorry!

I think ch.com/OUCH US and OUCH UK share many, many things, not least of which is a lot of people who care very deeply about helping others and will give time, money, and emotional energy they cannot easily spare to help fellow sufferers

BUT perhaps like Shaw said a VERY long time ago "England and America are two countries divided by a common language" This became for me even more acute on here as many of you know and I think our cultures and "norms" and "voices" are often very different too and many find these "differences"uncomfortable  Cool.

This suggests to me that the websites and forums are likely to need to be profoundly different too, but not necessarily better or worse.


W


I would not say our cultures are all that different Wendy.  


I would

W
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artonio7
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Re: are ch suffers classed as disabled?
Reply #15 - Nov 20th, 2008 at 10:05pm  
deltadarlin wrote on Nov 20th, 2008 at 7:42pm:
Tony,
If I'm not mistaken, the last year, the location wasn't announced until right around this time or the first of December.  


Has anyone submitted a formal proposal for next years convention?

just curious.

with warm regards,
Tony
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Re: are ch suffers classed as disabled?
Reply #16 - Nov 21st, 2008 at 11:18am  
NO bids to host next year's convention have been received.
  There has been a lot of talk here on ch.com about where it should be and some complaints about where it hasn't been, but the Convention Committee has received no offers to host.  Since no one has volunteered, the Convention Committee is doing research on a couple locations.  When we finish negotiations, the location will be made public.

As to how badly the OUCH site sucks, Tony, your opinion is noted.  Tens of thousands of other people and a team of medical researchers have had no problem accessing and navigating the OUCH website.  The only real ding we took in the research study that named the OUCH website #1 was that our reading level was thought to be too high for the average person.  The OUCH website is written at a 12th grade level and the average reading level is 8th grade.  I find it unfortunate that you now offer sharp public criticism here on ch.com, yet offer no suggestions to OUCH on how to make the site better, especially since I told you directly that any suggestions would be welcomed.  The Site Map and the changes to the format of the mass e-mail (which were both suggested by you in the past) is proof that we do listen when someone bothers to speak up.

Folks, we continually ask for input on the OUCH website, in the mass e-mails, in the newsletter and here on ch.com.  If OUCH isn't what you think it should be, it is because you aren't talking to us.  We want to hear from you.  If you have any questions, suggestions, ideas or comments, please send us an e-mail at Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register.  Better yet, volunteer to serve on a committee or team.  Also, the Board of Director elections coming soon.  If you have the time and ability, consider serving on the Board.  Helen Williams (aka LeLimey) is your Volunteer Coordinator and the Chair of the Nominating Committee.  Contact her at Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register.

OUCH is there for you.  Are you there for OUCH?


Mike
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Re: are ch suffers classed as disabled?
Reply #17 - Nov 21st, 2008 at 11:23am  
Getting back to the actual title of this thread, I can't speak to other countries, but it is my understanding that relatively few people in the US are granted disability solely for cluster headaches.  It is difficult for a Chronic sufferer to get disability.  It would be extremely difficult for an Episodic sufferer.  As was stated above, CH does not qualify as a condition that is indisputably disabling.  Each person is evaluated on a case by case basis.  There must be solid documentation by your physician(s) of the severity of your condition and the treatments that have been tried and failed.  Your doctor(s) will have to certify that you are, in his or her opinion, disabled by your condition.  You will also likely be evaluated by a government contracted physician and psychologist.  Most people will likely go through an original application, a couple of appeals and finally a hearing in front of a judge, who will ultimately decide the case.  Your medical records and work history records are reviewed by the court.  An employment specialist may be present at the hearing to testify as to whether there is work that you could do based on the severity of your disorder.  In all, the process can take up to two years and while you will receive compensation back to the date of your original application if you are granted disability, that doesn't help you for the two years you are without income because you can't hold a job due to the severity of your disorder. 

There are numerous links on the OUCH website concerning employment and disability in the US.  Check out this page:

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There are also links to CH Support sites in the UK, France, Germany, Italy, Spain, Norway, Hungary, Africa and Australia on this page:

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

Someone at each of these sites should be able to direct you to information concerning employment and disability in those countries.
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Re: are ch suffers classed as disabled?
Reply #18 - Nov 21st, 2008 at 11:33am  
Quote:
 Helen Williams (aka LeLimey) is your Volunteer Coordinator and the Chair of the Nominating Committee.  Contact her at Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register.

OUCH is there for you.  Are you there for OUCH?


Mike

Mike, Helen is sick right now (from what I gather), so who would be another contact?
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artonio7
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Re: are ch suffers classed as disabled?
Reply #19 - Nov 21st, 2008 at 11:43am  
Quote:
[size=12]<snip>

As to how badly the OUCH site sucks, Tony, your [b]opinion is noted.  <snip>  I find it unfortunate that you now offer sharp public criticism here on ch.com, yet offer no suggestions to OUCH on how to make the site better, especially since I told you directly that any suggestions would be welcomed.  The Site Map and the changes to the format of the mass e-mail (which were both suggested by you in the past) is proof that we do listen when someone bothers to speak up.

Folks, we continually ask for input on the OUCH website, in the mass e-mails, in the newsletter and here on ch.com.  If OUCH isn't what you think it should be, it is because you aren't talking to us.  We want to hear from you.  <snip>

Mike


Hire a professional to develop and maintain the site.

with warm regards,
Tony

modified for clarity
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LeLimey
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Re: are ch suffers classed as disabled?
Reply #20 - Nov 21st, 2008 at 12:16pm  
Melissa wrote on Nov 21st, 2008 at 11:33am:
Quote:
 Helen Williams (aka LeLimey) is your Volunteer Coordinator and the Chair of the Nominating Committee.  Contact her at Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register.

OUCH is there for you.  Are you there for OUCH?


Mike

Mike, Helen is sick right now (from what I gather), so who would be another contact?



Mel I check in on OUCH multiple times every single day. Have no fear, you will be answered within a couple of hours at most!!

Helen
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LeLimey
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Re: are ch suffers classed as disabled?
Reply #21 - Nov 21st, 2008 at 12:22pm  
Can we please take this thread back to where it was started? With a UK Ch'er looking for help

Ooodj, Wendy is an absolute mine of information on employment and CH. She has worked tirelessly for OUCH UK and for individuals with CH and if there is anything she doesn't know well - then it isn't relevant!

Use the OUCH UK site for all the info and further help you need. I hope you get what you need!

Regards
Helen

PS You are welcome here, you're questions won't generally be dismissed in other agendas!!  Smiley
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Re: are ch suffers classed as disabled?
Reply #22 - Nov 21st, 2008 at 1:48pm  
Melissa wrote on Nov 21st, 2008 at 11:33am:
Quote:
 Helen Williams (aka LeLimey) is your Volunteer Coordinator and the Chair of the Nominating Committee.  Contact her at Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register.

OUCH is there for you.  Are you there for OUCH?


Mike

Mike, Helen is sick right now (from what I gather), so who would be another contact?



Mel (and everyone else), if for some reason you can't get a reply from Helen, send a message to Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register.
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Re: are ch suffers classed as disabled?
Reply #23 - Nov 22nd, 2008 at 12:11pm  
I'm not certain about UK rules.  However, I am on Social Security Disabilty in the US due to my chronic clusterheadaches.  In my case, I worked for over thirty years, paying into that system.  I cannot work now.  Was awarded it the first try.  I believe, no matter what, you must document everything.  Time missed from work or school, activities of daily living that you are not able to do because of your CH, family plans and vacations and the childrens recitals you've missed-the effect CH has on your family life.  Headache diary is a very good idea-if you're going to use the KIP scale-which most doctors and bureaucratics do not understand-attach a copy. 

OUCH UK can help. 
Wishing you the best,
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Re: are ch suffers classed as disabled?
Reply #24 - Nov 22nd, 2008 at 12:37pm  
oodj wrote on Nov 18th, 2008 at 2:11pm:
I work in the UK and have started to have trouble at work with time off i'm taking sick due to CH. I have read on another site that CH is a disabilty so sufferers are protected by the disability discrimaination act. Has anyone had any experience of problems with work and what to do?


Listen to what Pubgirl tells you - she's an expert on UK employment law, and the person who wrote the articles for the OUCH(UK) website under the heading  'In the Workplace'

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OUCH(UK) Helpline - 01646 651 979
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