October 19, 2017, 03:34:13 AM *
Welcome, Guest. Please login or register.
Did you miss your activation email?

Login with username, password and session length
Pages: [1]   Go Down
Print
Author Topic: Advice on how to cope with a hospital outpatients appointment?  (Read 165 times)
0 Members and 1 Guest are viewing this topic.
Wits_End
Care Giver
Full Member
*
Offline Offline

Posts: 94


« on: October 09, 2017, 04:11:30 PM »

Caree has to attend outpatients on another issue, not related to her CFS.  I'd appreciate any advice anyone can give on how to minimise the effects of this on someone with severe CFS.

Thanks.
Logged
roger
Staff
Lifetime Member
*
Offline Offline

Gender: Male
Posts: 10053


After 12 years of trying, I'm now A OK


« Reply #1 on: October 09, 2017, 06:09:15 PM »

Hi W_E,

This is a difficult one, especially if the appointment is imminent. Is the concern related to physical issues like the actual traveling, negotiating hospital corridors etc, all of which can be extremely difficult where the CFS is at the extreme end? Or is it the mental or emotional issues like stress, anxiety, fear etc?

If the former, and if you feel the obstacles are insurmountable, then I’d speak to your caree’s GP, fully explaining the problems you envisage. Maybe he or she can come up with some good ideas.

If the latter, much depends on how imminent the appointment is. If it is imminent then, again, I’d suggest speaking to the GP who might be willing to prescribe a SHORT TERM medication. If on the other hand, you have a few weeks, it might be worth trying various self-help techniques of the sort I outlined on the ‘road to recovery’ board, though I suspect that you haven’t found the new board very helpful.

I wish I could give you an easy way to deal with this, but I suspect there probably isn’t one. But I do wish you all the best and I hope it will go well.

Best wishes.
« Last Edit: October 10, 2017, 07:21:12 AM by roger » Logged

'Nothing is, but thinking makes it so'
agapanthus
Staff
Lifetime Member
*
Offline Offline

Gender: Female
Posts: 8229


I'm a CFS sufferer...


« Reply #2 on: October 10, 2017, 06:47:10 AM »

Yes, it's a very difficult one. Dependent on the issues that the person you are caring for has I believe that some people will wear eye masks and ear plugs/defenders to cope with the sensitivity issues.

Also I would recommend speaking to someone in the department of the hospital that is being visited to outline the problems and see if there is some way they can help the process along by them being made aware of the other issues (eg appointment first on list so no waiting around, ability for the person to lie flat if needed, separate room to wait). Given our overcrowded and overworked NHS system the kind of reaction you may get may will be mixed, but if you can be specific about the problems it's worth a try.

I do not have severe ME but do get very anxious at some procedures and the differences re understanding and support in departments of our hospital have been immense - ranging from fantastic for a colonscopy,  and quite dreadful for an endoscopy.
Logged

Wits_End
Care Giver
Full Member
*
Offline Offline

Posts: 94


« Reply #3 on: October 11, 2017, 11:18:50 PM »

This is a difficult one, especially if the appointment is imminent. Is the concern related to physical issues like the actual traveling, negotiating hospital corridors etc, all of which can be extremely difficult where the CFS is at the extreme end?

Hi, Roger.  Yes, it's imminent, so no time to prepare, and yes, mainly the physical issues.  Particularly getting her downstairs (and upstairs again afterwards!- we're on the first floor) - if that involves medical professionals, that would be good, but then that means hospital transport - and there's no guarantee of what type that would be, and also no guarantee that they wouldn't then drive around picking up half-a-dozen other patients en route.  If a cab, then we don't get the help with the stairs.  I'm seriously wondering about blowing her mobility allowance on a private ambulance - if I can find one.  Those seem to be a bit few and far between, and even Googling hasn't helped much so far.

Re medication - are you thinking of a tranquiliser or something?  Not sure whether her GP is in for the rest of the week, but I can see if I can speak to her.

Thanks for the good wishes Smiley
Logged
Wits_End
Care Giver
Full Member
*
Offline Offline

Posts: 94


« Reply #4 on: October 11, 2017, 11:51:10 PM »

Yes, it's a very difficult one. Dependent on the issues that the person you are caring for has I believe that some people will wear eye masks and ear plugs/defenders to cope with the sensitivity issues.

Also I would recommend speaking to someone in the department of the hospital that is being visited to outline the problems and see if there is some way they can help the process along by them being made aware of the other issues (eg appointment first on list so no waiting around, ability for the person to lie flat if needed, separate room to wait). Given our overcrowded and overworked NHS system the kind of reaction you may get may will be mixed, but if you can be specific about the problems it's worth a try.

Yes, I think ear plugs and possibly defenders as well, plus eye masks are a definite necessity.  Am also wondering about bringing a lightweight wrap for a) possible padding and b) shielding from light. Plus a pillow or something for padding in the wheelchair.

I have spoken to someone in the department: they weren't (couldn't be?) very helpful.  It doesn't sound as though there's any separate room to wait and nowhere to lie down.  I got the feeling they didn't really understand, and were thinking maybe we should go private if we wanted those sort of facilities :(  And because this is an urgent referral there's no time for me to go and do a recce first.

Thanks very much for the advice.
Logged
roger
Staff
Lifetime Member
*
Offline Offline

Gender: Male
Posts: 10053


After 12 years of trying, I'm now A OK


« Reply #5 on: October 12, 2017, 05:53:11 AM »

Hi W_E,

Yes, some sort of tranquilizer - I'm not a fan of such things, but with no prep time maybe they could help short term. But something to discuss with the GP. If your GP is away maybe ask to speak with another one, stressing very strongly the issues you envisage?
Logged

'Nothing is, but thinking makes it so'
agapanthus
Staff
Lifetime Member
*
Offline Offline

Gender: Female
Posts: 8229


I'm a CFS sufferer...


« Reply #6 on: October 12, 2017, 07:44:34 AM »

Some further thoughts on things/organisations that might help.....although if the appointment is urgent/imminent, I do understand your increased problems.

1. Have you tried ringing your local PALS service? Here is a general link but if you google PALS and your locality it should bring up a link http://www.nhs.uk/chq/pages/1082.aspx?CategoryID=68
If not helpful this time, maybe for another time...

2. Have you tried ringing the ME Association for advice with this aspect? They have a call line http://www.meassociation.org.uk/information-and-support-line/meconnect/
They do have a number of booklets on various subjects too so may have one on how to cope with hospital visits but the helpline should be able to tell you this.

3. I found this private ambulance service when I googled
http://www.patienttransport.co.uk/
http://www.patienttransport.co.uk/hospital-transfers.html
Actually I thought the NHS employed some of these private companies now but I do agree that if you went via the NHS then you would end up with lots of other people going around the houses to get home.

Logged

Talen
Senior Member
****
Offline Offline

Gender: Male
Posts: 542


« Reply #7 on: October 13, 2017, 10:16:49 AM »

Just a thought.  Every hospital has a chapel although now they are called multi-faith /quiet rooms.  Could you check out the geography of the hospital.  If it is not too far maybe you could stay in the out-patients clinic and ask the nurses to let you know when you wife is next in line so you can go and get her.  Is she ok to be left on her own for a short period?

Talen
Logged
neptuno
Lifetime Member
*****
Offline Offline

Gender: Female
Posts: 1543


I'm a CFS sufferer...


« Reply #8 on: October 13, 2017, 11:08:35 AM »

Do you have a local voluntary community transport scheme ?
 Red Cross or Age Concern can sometimes help.
NHS hospital transport probably means a lot of waiting around and not necessarily a direct journey.

Great idea Talen about the quiet chapel room...might remember that myself !
Logged
Wits_End
Care Giver
Full Member
*
Offline Offline

Posts: 94


« Reply #9 on: Today at 12:22:20 AM »

Thanks to everyone for the advice.  The visit is over, and now we're awaiting results.  It was getting on for 3 hours, and unpleasant, but she's trying to recover from it, even though shattered.  I may post some further info when time permits.
Logged
Pages: [1]   Go Up
Print
Jump to:  

Black Rain by Crip

© Chronic Fatigue Syndrome

Powered by SMF 1.1.21 | SMF © 2015, Simple Machines
XHTML | CSS