Page 1 of 2 12 LastLast
Results 1 to 10 of 20

Thread: Severe stage COPD and ESA / DLA / Whatever...

  1. #1
    Senior Member RaeUK's Avatar
    Join Date
    Sep 2012
    Location
    in a world of my own ...
    Posts
    567

    Severe stage COPD and ESA / DLA / Whatever...

    I pondered a bit as to where to stick this post. The Health forum didn't seem quite right, so yer tiz. And it's my thread so I'll waffle if I want to ...

    COPD. I hate that term. It's a catch-all umbrella phrase that just doesn't sell the product. It's mis-sold by the NHS as a 'smoker's disease' and yet nothing could be further from the truth. It includes miners and their work induced infirmities, it includes the victims of pesticide. It includes people unfortunate to have spent a life in a close relationship with asbestos. It's a pollution disease that was highly prevelant in the industrial heartlands of Victorian England. And it's perfectly summed up by the graphics at the start of Have I got News For You - oddly enough, that's how I describe the disease to people!

    And, in my personal experience, it is not understood by the DWP. Nor, unlike other major areas - ie mental health - does there appear to be any charity championing our cause. You might, of course, know different ...

    Whilst I'm clambering aboard my high horse, I should just draw attention back to the thread title. Severe stage. It's there for a reason. Just about everybody with some form of internal breathing apparatus can lay claim to modern day COPD. Or at least that's how it appears. It starts off with the designator 'mild'. Mild, FFS! What? My own brother admonishes me with the condescending 'well, I have COPD you know'. No you don't. You have a cough and a tickle. And can still work. Severe stage is a different ballpark. So, if you don't mind, leave the grown-ups to talk...

    Call me old fashioned but, where possible, I find the old terminology is preferable. The two main ones being Emphysema and Chronic Bronchitis (not to be confused with it's wimpy cousin that lays you low for a few weeks. This 'un is permanent). My particular flavour of the COPD cocktail is Chronic Bronchitis, Severe, Stage 3. Now that tells the whole story. People can relate to that. They understand my lungs are fooked big stylee. The term COPD just doesn't cut the mustard.

    Which meandering brings me to the DWP. They're only people. Put on your form you have COPD and it's assumed you have a cough and a tickle. Go into it in much more detail, investigate and learn about exactly what lung disease you have. It does help although, to be fair, my story isn't exactly flag waving great.

    I'd like, in an ideal world, those of you with Severe COPD to post here with your experiences as far as the DWP is concerned. It's a tough world out there as far as benefits are concerned and will only get tougher. It'd be nice to band together ...

    [Yes, I know, this is probably about half a post short but - in mitigation - it's about all I can write in one go. I'll be back in a mo to detail my experiences with trying to get the full rate of ESA...]

  2. #2
    Senior Member
    Join Date
    Jan 2012
    Posts
    1,803
    As you say there are many illnesses that don't fit into " the norm`" whatever that is. I remember it was not so long ago that ME, CFS and Fibro were classed as a joke illness and "all in the head". Seriously ill people were being treated like loonies and not eligible for benefits. For some reason some illness labels just don't seem to descibe the problem accurately and as such they are not taken seriously.
    It's so hard to combat deeply ingrained human attitude that comes from ignorance.

  3. #3
    vikstar
    Guest
    Quote Originally Posted by RaeUK View Post
    I pondered a bit as to where to stick this post. The Health forum didn't seem quite right, so yer tiz. And it's my thread so I'll waffle if I want to ...

    COPD. I hate that term. It's a catch-all umbrella phrase that just doesn't sell the product. It's mis-sold by the NHS as a 'smoker's disease' and yet nothing could be further from the truth. It includes miners and their work induced infirmities, it includes the victims of pesticide. It includes people unfortunate to have spent a life in a close relationship with asbestos. It's a pollution disease that was highly prevelant in the industrial heartlands of Victorian England. And it's perfectly summed up by the graphics at the start of Have I got News For You - oddly enough, that's how I describe the disease to people!

    And, in my personal experience, it is not understood by the DWP. Nor, unlike other major areas - ie mental health - does there appear to be any charity championing our cause. You might, of course, know different ...

    Whilst I'm clambering aboard my high horse, I should just draw attention back to the thread title. Severe stage. It's there for a reason. Just about everybody with some form of internal breathing apparatus can lay claim to modern day COPD. Or at least that's how it appears. It starts off with the designator 'mild'. Mild, FFS! What? My own brother admonishes me with the condescending 'well, I have COPD you know'. No you don't. You have a cough and a tickle. And can still work. Severe stage is a different ballpark. So, if you don't mind, leave the grown-ups to talk...

    Call me old fashioned but, where possible, I find the old terminology is preferable. The two main ones being Emphysema and Chronic Bronchitis (not to be confused with it's wimpy cousin that lays you low for a few weeks. This 'un is permanent). My particular flavour of the COPD cocktail is Chronic Bronchitis, Severe, Stage 3. Now that tells the whole story. People can relate to that. They understand my lungs are fooked big stylee. The term COPD just doesn't cut the mustard.

    Which meandering brings me to the DWP. They're only people. Put on your form you have COPD and it's assumed you have a cough and a tickle. Go into it in much more detail, investigate and learn about exactly what lung disease you have. It does help although, to be fair, my story isn't exactly flag waving great.

    I'd like, in an ideal world, those of you with Severe COPD to post here with your experiences as far as the DWP is concerned. It's a tough world out there as far as benefits are concerned and will only get tougher. It'd be nice to band together ...

    [Yes, I know, this is probably about half a post short but - in mitigation - it's about all I can write in one go. I'll be back in a mo to detail my experiences with trying to get the full rate of ESA...]


    As someone who has a close relative who also suffers from COPD, and gained entry to the Support Group, there is a remedy to the quandry that you pose.

    Most COPD sufferers will attend a "clinic" at their G.P. 's surgery or elsewhere. At this clinic they should be given a spirometry test, this test gives a printout, which includes their FEV1, Peak Flow, Lung Age, and severity level of the COPD, etc, etc. They will also be graded on the Medical Research Council's Dyspnoea (Breathlessness) Scale from 1 to 5, 5 being the most severe.

    You should be able to obtain copies of the above medical records from your G.P. practice, and include them with your ESA50. The MRC B Scale is recognised worldwide as the standard measurement for levels of disabilty caused by "Breathlessness".

    If you don't attend a COPD/Asthma clinic, you could request a spirometry test.
    Peak Flow readings can also be useful, in that they show what a normal peak flow would be for a compararative healthy person. All the above can help to show that your level of "Breathlessness" would impact on any actions involving exertion, which may include "Mobilising" or "Moving from one seated position to another unaided", etc. Depending on the severity, it would certainly impact on walking or the use of a manual wheelchair unaided.

    See the following links.

    http://www.patient.co.uk/doctor/Diagnosing-COPD.htm

    http://www.peakflow.com/top_nav/norm...ues/index.html

    http://www.peakflow.com/portal_nav/patient/index.html

    http://www.nice.org.uk/usingguidance...noea_scale.jsp
    Last edited by vikstar; 17-09-12 at 12:53.

  4. #4
    vikstar
    Guest

    Helpful information on COPD and ESA

    Hi all,
    As someone who has a close relative who suffers from COPD, and has been placed into the Support Group of ESA on being transferred over from IB, the following information may be of help.
    Most COPD sufferers will attend a COPD/Asthma Clinic at their G.P.’s surgery, or maybe a hospital. Checks are generally done annually or 6 monthly, depending on the severity of the condition.
    Part of these checks should be a spirometry test, which will provide a print out, giving the person’s peak flow, FEV1, lung age, and the severity level of the COPD. Copies of this print out can be obtained from your G.P., there may be a charge though.
    As well as the spirometry test, there will also be a grading done on The Medical Research Council (MRC) Dyspnoea (Breathlessness) Scale. The scale runs from grade 1 to grade 5, 5 being the most severe. You can see the descriptors that go with the 5 levels of the scale on the NICE website below.
    http://www.nice.org.uk/usingguidance...noea_scale.jsp
    The MRC Dyspnoea Scale is recognised worldwide as the guideline to levels of disability as a result of breathlessness. So as you should see providing copies of your spirometry test, and your MRC Dyspnoea Scale Grade can be very helpful to proving your level of “Limited Capabilty” to ATOS and The DWP.
    You could send copies of the above along, with your ESA50 Questionnaire.
    Other helpful readings are your Peak Flow, this will give comparisons between your own lung capacity, and that of a healthy person of the same age, height, weight and gender. Further information can be seen on the two links below.
    http://www.peakflow.com/top_nav/norm...ues/index.html
    http://www.peakflow.com/portal_nav/patient/index.html
    Further information on COPD can be read below.
    http://www.patient.co.uk/doctor/Diagnosing-COPD.htm
    Obviously, if you can show with the above information, that your level of breathlessness limits you to the extent that you have trouble mobilising, as in the ESA descriptors, which includes walking and the use of a manual wheelchair unaided, as both these action require exertion, then it may help you to qualify for the Support Group.
    Breathlessness on exertion will obviously cover all forms of moving around, and could be tied in to the other questions in the ESA50, also.
    If you don’t have spirometry tests, there is nothing to stop you requesting them at your G.P.’s surgery, you could also request an assessment on the MRC D Scale.
    I hope all the above will be helpful to any COPD sufferers who may read it, as I know how debilitating this condition can be.

  5. #5
    vikstar
    Guest
    Hi,

    As someone who is new to this site, I am rather disappointed in that I have written two very helpful posts on this thread, which have not been posted.

  6. #6
    Senior Member
    Join Date
    May 2012
    Posts
    1,465
    did you press the right button ie post quick reply it wont post if you pressed +REPLY TO THREAD

  7. #7
    vikstar
    Guest
    I've tried that. this message came up.

    "Thank you for posting! Your post will not be visible until a moderator has approved it for posting. "

  8. #8
    Senior Member RaeUK's Avatar
    Join Date
    Sep 2012
    Location
    in a world of my own ...
    Posts
    567
    Well, you've managed to write two so far, vikstar.

  9. #9
    davewhit
    Guest
    I think new posters cant post links

  10. #10
    vikstar
    Guest
    Well all 3 came up at once !!!

    Wasn't aware that there would be around a 48 hour delay in showing the posts.

    I have deleted the two duplicate one.

Similar Threads

  1. PIP ATOS Assesment report is now in the 'Quality Control' stage
    By Kaff79 in forum Benefits - help & advice on disability benefits, incapacity benefits, ESA and DLA
    Replies: 3
    Last Post: 15-03-14, 08:38
  2. Payment after appealing / Tribunal Stage
    By Graven in forum Benefits - help & advice on disability benefits, incapacity benefits, ESA and DLA
    Replies: 2
    Last Post: 15-06-13, 13:03
  3. ESA and COPD
    By michelle61 in forum Benefits - help & advice on disability benefits, incapacity benefits, ESA and DLA
    Replies: 15
    Last Post: 28-05-13, 18:20
  4. Asthma or COPD?
    By RaeUK in forum Health - help & advice on health issues for disabled people
    Replies: 10
    Last Post: 20-03-13, 16:51

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •