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pete
21st April 2015, 14:53
Hi !
I am at a loss to understand the NHS system , last year I had a infection in a sensitive part of my person ,I will not explain in any great detail as I don't want to put you off your lunch !. It had begun by March last year and my GP came out and examined me ,he knew what it was just to confirm his diagnosis he sent me for a ultrasound scan of the now cricket ball sized lump, the guy who did the scan confirmed it was fluid and not a growth . A week later we rung the GP to be told it was benign and it would drain in time,asked how long oh well can't be certain but likely months.
Now I am no doctor but we're and how it was supposed to drain too escapes me ,but now twelve months plus ,I contacted the GP and he sent me to a urologist ,I had spent the days waiting convincing myself the swelling was at last going to be dealt with. We went to the hospital armed with iPad that had the full history on and how very very uncomfortable it was. Then and now twelve months on its very very very uncomfortable

Terry
21st April 2015, 17:28
Don't think that I could wait that long Pete mate;

Can't believe that you have been so patient, get it sorted out.

Love Terry

pete
21st April 2015, 17:58
Hiya Terry,

Me neither ,it has been a long time, the only thing I was grateful for ,not being at work ,I really doubt if i could have drove the distances or put in full days.,hope your doing OK ,well as good as we can be.

Pete

Ellie
21st April 2015, 18:35
I wouldn’t have been that patient or kind about it Pete. Can’t believe they left you to your own devices and hoped it would just go away!
Any chance it’ll be sorted before your hols?
Thinking of you,
Love Ellie.

Jock
21st April 2015, 18:57
Hi Pete

I saw your longer post earlier and had some thoughts.

1. Hassle them into action.
2. If you require a new scan try to get ambulance transport so that they can take you in 'commando' and easily shift you from ambulance bed to scan table.
3. If 2 fails then you need a mobile hoist, sling and trained staff to change you and hoist you on/off the scanning table.

Don't be shy in letting them know your needs as a result of MND.

Kind regards Jock

Candle
21st April 2015, 19:21
Pete. I didn't see your full post but would suggest you contact the Patient Advice and Liaison Service at your local hospital and explain your circumstances. They can act on your behalf to ensure that anything you need is put in place. If you require an ambulance the ambulance service for your area can also be asked to transport you however is most convenient for you. If you need hoisting, etc then again the PALS team can ensure this is all in place to make your appointment as smooth as possible. Good luck.

Graham
21st April 2015, 20:31
Hi Pete,

Did you hear the one where the old fella goes to the docs and asks for a flu jab? The doc gives him the jab and on the way out he asks, 'Will I need one next year?' Doc replies, 'You will be fine!'

I had a dentist visit me at home four months ago and got the all clear. A month later a tooth fell out! Just crumbled away.

They really do think that we are deadweight and expect us to snuff it sometime soon. We have to make a fuss if we want anything more.

It is tough mate.

Regards

Graham

pete
22nd April 2015, 18:33
I wouldn’t have been that patient or kind about it Pete. Can’t believe they left you to your own devices and hoped it would just go away!
Any chance it’ll be sorted before your hols?
Thinking of you,
Love Ellie.

Hi Ellie,
Thank you for replying, I hope your as well as you can be . No chance of getting anything done really, it's three weeks before we go ,and I had the CT scan this morning at hospital . It takes a week to ten days to get the results to urology and considering its next door to imaging ,just shows some things don't change. So yet again despite the year that's passed may well be Two years by the time they finally decide to drain it, I even thought of keeping the canula in my hand and doing it myself , but when I thought about it on the way home my eyes started running ,not as brave as I liked to think i am when it came down to it.
Love
Pete
XX

pete
22nd April 2015, 21:33
Hi Pete

I saw your longer post earlier and had some thoughts.

1. Hassle them into action.
2. If you require a new scan try to get ambulance transport so that they can take you in 'commando' and easily shift you from ambulance bed to scan table.
3. If 2 fails then you need a mobile hoist, sling and trained staff to change you and hoist you on/off the scanning table.

Don't be shy in letting them know your needs as a result of MND.

Kind regards Jock


Hi Jock,
Thank you for the advice, but our cash short trust who runs the two hospitals insist that you really have to be very poorly to get a ride in an ambulance , my daughter took the day off to take me ,so with two nurses we managed to get scanned ,now wait for results .

Regards
Pete

pete
23rd April 2015, 16:04
Pete. I didn't see your full post but would suggest you contact the Patient Advice and Liaison Service at your local hospital and explain your circumstances. They can act on your behalf to ensure that anything you need is put in place. If you require an ambulance the ambulance service for your area can also be asked to transport you however is most convenient for you. If you need hoisting, etc then again the PALS team can ensure this is all in place to make your appointment as smooth as possible. Good luck.
Hi Candle,
We have to use the county at Stafford at the moment they are still deciding who goes where so very little in the way of services, I did look when we came out yesterday ,and the offices that used to be PALs ,is no longer . On the plus side and only if the media will stop muck raking ,the hospital is now a better place than it was a few years ago so I will do as you suggest when it's reinstated..

Regards
Pete

pete
23rd April 2015, 16:23
Hi Pete,

Did you hear the one where the old fella goes to the docs and asks for a flu jab? The doc gives him the jab and on the way out he asks, 'Will I need one next year?' Doc replies, 'You will be fine!'

I had a dentist visit me at home four months ago and got the all clear. A month later a tooth fell out! Just crumbled away.

They really do think that we are deadweight and expect us to snuff it sometime soon. We have to make a fuss if we want anything more.

It is tough mate.

Regards

Graham

Hi Graham,
It's good to hear from you, yes I agree with you totally ,from day one I felt the so called clinics and appointments that seem to take over what time we might have left became a waste of valuable time,I now only see the respiritry team every six months as they are the only dept I actually had any positive help, and things that have cropped up since I sense no rush to get sorted, maybe it is as you say ,so having a terminal condition equates to money spent on hopeless cases is really a waste of Hospital resources and money , like you say It is tough,we deserve better!.

Pete

marieline
25th April 2015, 09:30
Dear Pete, life is hard enough with MND as it is to have to put up with other discomfort for that long. I do hope appropriate treatment will follow the scan result. Hang in there Pete. Best wishes Marieline

pete
26th April 2015, 15:59
Dear Pete, life is hard enough with MND as it is to have to put up with other discomfort for that long. I do hope appropriate treatment will follow the scan result. Hang in there Pete. Best wishes Marieline

Hi
Marieline,
Hope your ok ,I have given up getting it sorted, despite having written a complete history of when things went wrong from taking three courses of antibiotics then told it would drain normally in time then fourteen months later to think we where going at last to get some treatment ,the guy didn't even read or comment on what his intentions where not even a basic examination was performed,ct scan has been completed ,but a week after we get back from holiday he has arranged further tests including a camera examination not of the swelling but waterworks in general, so not holding my breath for anything in the way of treatment in the foreseeable future ,still I know what NHS means to me ( No Help Soon) anyway Keep smiling .
Pete

marieline
28th April 2015, 06:10
hello Pete,
This problem is certainly taken seriously where i am. strangely enough a couple friends of mine in their early forties suffered similar incidents last year. They both received the tests and treatments needed. Being a nurse i had to listen to the many symptoms but i said no to examining them as i'm sure the GP did a better job of that. If i may say this, one turned out to be a thrush colony following a course of antibiotic. Because he seeked treatment straight away it was quickly dealt with, the other case also followed antibiotic. So as you say, it could be benign and clear itself soon. Take care of the discomfort Pete, this is one area that is not affected by MND, i am sure that it would have cleared out by now. Best wishes xo

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