View Full Version : Can anyone Explain ?.

6th April 2012, 19:32
Hi All,

Just had my apointment with the ENT doctor, apart fron the usual delay in being seen i was almost relieved to be seen by a fresh face ,He began all seemed well till my wife told him i had MND, that pretty much ended the consultation ,he scribbled as doctors do and closed the file he had been so keen to read prior to my wife saying those three letters, Now why is that ?, I had gone on the advice from the SLT and OT therapist to see if anything could be done about the constant running nose and the endless production of sticky phlegm, Sorry i dont know any better way of describing it . But once he knew about the MND it was if this was yet another thing they could do nothing about, I would love to know if there is anything not attributed to MND , What concerns me more is , Is this just my bad luck or is this the way everyone is treated, once its known we have the dreaded condition is it the norm to just let it take its course and offer nothing in the way of treatment. Moan over and back to the steaming cup i guess ?


6th April 2012, 19:48
Hi Pete we have found the same thing too with John once you mention mnd its like you are past your sell by date and just recently we both feel we are left to get on with things.I have been trying to get hold of our district nurse since John came out of hospital last week we now have to go through a intregated community team...............well trying to get past the woman who answers the phone is nigh impossible.I asked for a call back and was told they are very busy and can it wait till his planned visit this tuesday.. Good luck with the steaming xx

6th April 2012, 20:01
Hello Irene,

So its not just me then , Hope your well and Johns on the mend now he has some one who cares looking after him ,I know this sounds like sour grapes but i do think , the care standard in hospitals has gone down , I know its a hard job looking after sick patients, but isnt that why they are there ? And yes we have a similar person who now protects our GP from his patients, dont know how much she is paid but ,she never varies from her script,normally we would manage How are you today, but no more sadly

6th April 2012, 20:18
Its not sour grapes at all Johns recent stay in hospital wasnt what I would have wanted for him.I think,like computetec said in an earlier post today that the hospital staff are ill informed about the needs of mnd patients if you look on my recent posts on aspiration pneumonia you will see what I mean.Mnd is a dreadful disease and we shouldnt have the problems we have .When John was first diagnosed things went along ok but it seems now its been 19 years they cant be bothered with him.Only recently he was referred for an urgent appointment with the urologist the letter came this week hes already waited five weeks and wont be seen till the end of May.

7th April 2012, 10:45

I wonder if it will be the same when I see my urologist in April. I mentioned that my grand parents had MND and ms and he referred me onto the neurologist but before his referral I was admitted to hospital. It's been 5 months since I last saw him and wonder if I get, the same reaction. I'll keep you posted. Oh, and I'm on a rant critical life are trying to wriggle out of paying up anyone else had that problem if so how do you fair?
Lifes not going well we lost our faithful GSD last week and this week it Scottish Widows...grrrrrr


7th April 2012, 10:56
Hello Scott ,

long time no hear ? , Hope your well and regards to the bride , and sorry to hear about your loss, As for the hospitals , i do hope not , i think its a case of where you live and as i have Drawn the Short straw there (Stafford Hospital) in the news for all the wrong reasons , But it does seem that many folk who work in the hospitals have little or no experience of treating MND patients, or even wanting to pursue treatment for the other problems you find along the way , it seems as if all is down to MND , And as far as insurance , best of luck with them i am sure there is a small clause somewhere that excludes you claiming , Jaded John i remember did a post about his , maybe worth a look, Are you still enforcing the law ?


8th April 2012, 10:52

If you look here you should get some tips.



8th April 2012, 11:58

Thanks for the tips. I'll keep you posted and I have a feeling this will end up with the Financial Ombudsman. :(


Just going back to work next week for a meeting to find the way forward and what job I will be doing short-term hopefully something more than pushing paper....won't hold my breath!


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