I now have an appointment with my MP Kris Hopkins on Fri morning 13th July, we know the law has not been broken so its going to be a huge matter of principle that the ‘system’ seems to not recognise sarcoidosis, I will be writing an in-depth article on my experience of trying to get help from the benefits system while I was at my worse, which we know the system failed me. Thankfully I appear to be improving even quicker – we think? and my search for appropriate employment will deepen.
All I am after is a system which is fairer to those that can be quite seriously ill but with potential to recover, sarcoidosis is not covered like many other mainstream illnesses, if you put cancer, crohn’s disease, diabetes, and numerous other serious conditions into an illness mixture, what then gets poured out is sarcoidosis, the system fails us big time…
Today I got news that my chest is improving, substantially it seems, so, all round it appear’s my fallen apart body its finally pulling together again! I must really say that all the walking I have been doing must have been helping, next is to get on my bike and get some cycling fitness again. Exercise sarcoid, it really can help, feeling quite happy, living with sarcoidosis! Bring on that appropriate employment.
So I have now gone from Employment Support Allowance to Job Seekers Allowance, job centres are superb places, how ‘healthy’ folks stay unemployed for life is a little beyond me, I guess its simply part of that cycle, and next Monday its my personal job helper or whatever. A job by the Autumn should be a decent target for me, silly me thought companies had to take on a % of folks with illness/disability, but, as its been pointed out including this morning its only those companies above a 250 workforce and I would need to be registered. Not to worry, Autumn is a decent target.
Sarcoids can work but we can be a little limited, for me none starters could be; healthcare – illness needs to be avoided best possible, manufacturing/engineering – fumes need to be avoided best possible, plumbing/construction – dust needs to be avoided best possible. Though I was very good in the Lean Manufacturing environment, maybe a warehouse, retail, work from home? need £16k gross to get by…
That’s pretty much all my evidence sorted for tomorrow’s tribunal. I no doubt believe it will fail, so I guess a fresh claim then has to go in from June 4th 2011. I would much prefer to be well again, and not a sarcoid.
Overall im in a worse condition than when diagnosed, all im after is the ‘system’ to support me while we get my sarcoid stable… then I most certainly would like to work in appropriate employment.
Sarcoidosis can put many folks off exercising, its understandable due to the difficulties sarcoid can put us through. Something that puts sufferers off is the initial get up and do it, you can it! I explain how I try and work through my exercising here, you to really can, have a view.
I received the re-arranged appointment for the EaSa tribunal/appeal to 7th June 2012 at 14:40, on this day I also have an appointment with the Neurologist at St Lukes hospital, Bradford at 8:40, as you can – or not – imagine the hospital appointment is more important, the chances are though, and public transport permitting, I should still be able to get over to Leeds in time.
I also enclose three attachments, these are communication letters leading upto June 2011 at my then employers Airedale hospital, you should read them in the order that I have numbered.
Dr Smith is the Airedale occupational health physician, the letters are explaining a few things, including; one, my sarcoidosis prevented me from working and two, the dosage of 20mg/day Prednisolone was too high.
As of the 2nd of June 2011 (the date you mention the tribunal is to cover), I was still on 20mg/day of Prednisolone.
If required I can get a letter from my doctors explaining the same to that date, the problem is that will cost me £35…
I hope this information is useful to you, I take it all other information from the 3rd June 2011 would be irrelevant at this stage? including my increased dosage of Prednisolone to 40mg/day.
Its almost two years since I first started with seriously bad problems in my eyes, eventually sarcoidosis was diagnosed, it was obvious that sarcoid had helped bring on bilateral uveitis. Some of the scariest times of my life followed, I struggled with simple things like filling out forms and counting out bus fares, crossing the road was another matter, judging the kerb and traffic was a huge challenge.
Thankfully things seem stable, well, my lungs, although one of the nodes is now slightly smaller the others are the same, the breathlessness can be so frustrating, but I feel sure the direction is still good. Onward and upward…
And so the evidence builds, my evidence against the corrupt benefits system. I have to prove that I was unable to work as of June 2011. As can be viewed here I started to be ill in June 2010, in fact it was earlier but this is the time I could no longer work and had to go on the sick. Eventually we found it to be a condition sarcoidosis, at the time I was employed as a healthcare support worker at Airedale Hospital.
As of June 2011 I was not allowed to return to work, jointly because of my medication and the fact I have sarcoidosis, both of these combined and working with ill folks are not good ideas as it could well have seriously put my health in a perilous position, you can view one of the letters from the hospital doctor below.
It should be clear cut in my favour but as so many sarcoidosis sufferers find out the system and its helpers in ATOS seem to struggle to recognise sarcoidosis, what is sarcoid they should ask, well sarcoidosis is/can be a serious medical condition and despite many folks views it can most certainly be fatal.
It were not until the end of 2011 that the consultants decided to reduce my Prednisolone, that resulted in my lungs getting some serious attacks from the sarcoid and therefore to double my original dosage of 20mg/day to 40/day.
Yes blindness can be temporally and/or permanent and usually through Bilateral Uveitis. What are sarcoidosis eye symptoms though? its a question that seems to be brought up quite a bit, here is information on eye problems brought on by sarcoid including blindness. Hoping this straight forward explanation helps those who certainly – like me – do not like too much technical terms within many organisations explanations!