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Trevorhb
10th March 2015, 19:02
Recently my specialist nurse said that if in the future I did not want to go to my MND Clinic or to Papworth for breathing assessment, it was alright to stop. I wonder if the people on here who condition is more advanced still go to clinics?

Ellie
10th March 2015, 19:19
I rarely see my consultant or hospital team, but I am well looked after by the Community Team.
I’m in my 9th year of ALS and really, hospital visits aren’t worth the hassle for what I get out of them.
Ellie.

Springtime
10th March 2015, 19:34
Yes Trevor, my husband is still under the respiratory team he goes back in May. I have to pick an overnight oxymeter from the hospital tomorrow and then take it back for readings on Thursday. I am going to ask if they will monitor Hubby's breathing for a month, as it is very hard when I am with him every day to actually see what deterioration there is.
Springtime

willsandco
10th March 2015, 20:10
I am due to sheffield on thursday 18th. I will let you know if they make another appointment. Hope so because I like going over there. Lovely crowd of people Joycie x

mik
10th March 2015, 22:54
i know longer see anyone at my local hospital. now i've had my trache it takes longer to get ready to go out and although i think the NHS is a wonderful service, just poorly managed and underfunded by a string of incompetent government's there is little they can do in a 10-15min appointment. so i have great local team who come to me when needed and my trache team come to me once a month for my change over. so i'm well supported just not in hospital.
mik

Trevorhb
11th March 2015, 09:25
I think you will continue to get appointments Joyce, it is up to you when you stop going. I have a clinic today and to be honest it is just a report and chat, that is all.

Jock
11th March 2015, 10:09
I suppose the deal breaker is whether we get any benefit from our visits? My day hospice is useful to me, but my Neurologist is less so (which he freely admits).

All the best today Trevor.

Trevorhb
11th March 2015, 13:38
Back from the clinic, had a chat with my neurologist and specialist nurse, but only to report what has been going on. Also saw my neutricianist who weighed me and advised on peg care. Nothing really which could not have been done at home or over the phone. A long, tiring morning with little real benefit.

Jan
11th March 2015, 13:43
I was asked by my MND nurse whether I wanted another trip to see the Neurologist, my response was well she can't cure me so I see little point at the moment, she agreed and I shall continue on this path now with the MND nurse and the hospice care at my side

Springtime
11th March 2015, 13:51
My husband will be attending the MND clinic again in May, I think it is just to be monitored. I suppose it's very hard for them as its sounds as if that's all they can do unfortunately. I suppose it's some sort of contact point for many.
Spr ingtime

Springtime
11th March 2015, 13:58
Jan, I really don't know what we would do without the support of the hospice team. We both know they are always there for us and understand so many of the problems that arise. They are always absolutely honest with us in a very kind caring way, which helps when it's saying something we don't want to hear.
Springtime

Davec
11th March 2015, 14:47
Sharyn refused to attend since there was nothing to be done, she hated being prodded and poked, and stared out in the waiting room! So they came to us and prodded, and poked, but no staring!

willsandco
11th March 2015, 17:09
We always take the last appointment so nearly everyone has gone home. We went the first time at 1300 hours, I hadn't been diagnosed then and we just were so dismayed, even shocked, by the continual procession of wheelchairs past us while we were waiting. People who could hardly speak, people saying they were having a PEG done the next day, people with BIPAP machines on. Surely this wasn't going to happen to me! Now a year on, I have no speech, have had a PEG and have BIPAP machine. But we still take the last appointment.! Joycie x

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