Hi all, I have to share an experience Andy and I had in a large NHS hospital last week.
It was Andy's appointment- at the Sleep Clinic- for his review of his sleep apnoea & CPAP machine.(that's the air machine & mask which he wears at night)
All went fine until the nurse handed Andy the clipboard with the Epworth sleep scale questions. This has 7/8 questions about when he is likely to doze off, each answer on a scale of 0-3.
Now anything which remotely resembles a 'multiple choice' question is a complete no-no for Andy - even what may seem totally simple for most of us just causes him confusion and anxiety, so he had a quick read then handed the board to me and said he couldn't do this.
I obviously knew exactly what he meant, which was that he needed me to take him through it in 'bite sized chunks' so that we could get the right answers down.
(during this time, the nurse had moved from the desk in front of us, to a worktable behind us where she was adjusting the machine.)
She then said 'It's supposed to be Andy who completes this form, not Mrs'
I kindof half turned around to face her, and said that because of the illnesses, if Andy asks me for help, I give it.
She made a big deal of me NOT writing on the form, as they need the correct information From The Patient - not the wife!!!!
Again, I turned to face her better, and asked if she knew about the other diagnosis. She replied 'Yes, I need Andy to fill in the form.'
In disbelief, I asked her if she knew about the dementia.
'Yes I know about that'
So you'll know there are some things which are difficult, especially when there are distractions? (she did like to witter on, and had shown no regard for giving Andy any extra time to absorb what she had been saying!)
'Yes I know that, he'll be fine if you just let him take his time' witter witter witter !!!!!!!!!!!!!!
Somewhat gobsmacked, I had to tell her we need to calm things down ( I could see Andy becoming agitated) and motioned with my hand in a downward manner.
She then became even more wittery.....and said 'everything was fine until you became aggressive' to which I replied I am not the one being aggressive - please stop speaking until we get this form completed.
That brought a retort from her of a PHFFFFF over her shoulder - you know, as we may do to a piece of dirt on our shoe !!!!
I turned back and gave the clipboard to Andy saying to have a go at it, and I'm here to pick up the pieces if he needs me.
This he did, although some of the answers were scored as a low level 1 where they should have been a definite 3.
However, we did our normal routine of a bite sized chunk - with example where needed - so that Andy could then give a Yes/No answer, as opposed to having to calculate 0-3.
The nurse left the room for a few minutes, and when she returned I can only say I felt like I'd stepped into a parallel universe!!
I think she must have had a personality transplant in those couple of minutes she was out of the room.
She resumed her seat at the desk, and proceeded to acknowledge how wonderfully well Andy & me worked as a team, that she had noticed how well I asked the question, used an example and approached the required answer from a whole different direction.
'It's wonderful when we see patients being helped like this, and very informative for us to see from a different perspective what is required, because we don't know what individual patients need'
'I can see you are a very caring person, and love your husband, it shows through in how easily you are willing to help him'
etc etc etc !!!!!
As you will all realise, I'm not posting this to blow my own trumpet....the reverse is true....like everyone else I loose it once in a while, and we all know what a bloomin' lot of hard work it is to figure out one method of coping......before things change and we have to start all over again....... but -
my reason for this post is to show that we must, must, must stand our ground against even the most highly 'qualified' medics if we know they are - not actually 'wrong' - but lacking in understanding of what OUR loved one or patient needs.
They know their job, I have no doubt.......BUT I KNOW MINE TOO.... so don't MESS with me!!!!!
Rant over folks...... we mst not allow ourselves to be downtrodden by those who don't always know better!!
Take care all,
lots of love, Necion. xx
It was Andy's appointment- at the Sleep Clinic- for his review of his sleep apnoea & CPAP machine.(that's the air machine & mask which he wears at night)
All went fine until the nurse handed Andy the clipboard with the Epworth sleep scale questions. This has 7/8 questions about when he is likely to doze off, each answer on a scale of 0-3.
Now anything which remotely resembles a 'multiple choice' question is a complete no-no for Andy - even what may seem totally simple for most of us just causes him confusion and anxiety, so he had a quick read then handed the board to me and said he couldn't do this.
I obviously knew exactly what he meant, which was that he needed me to take him through it in 'bite sized chunks' so that we could get the right answers down.
(during this time, the nurse had moved from the desk in front of us, to a worktable behind us where she was adjusting the machine.)
She then said 'It's supposed to be Andy who completes this form, not Mrs'
I kindof half turned around to face her, and said that because of the illnesses, if Andy asks me for help, I give it.
She made a big deal of me NOT writing on the form, as they need the correct information From The Patient - not the wife!!!!
Again, I turned to face her better, and asked if she knew about the other diagnosis. She replied 'Yes, I need Andy to fill in the form.'
In disbelief, I asked her if she knew about the dementia.
'Yes I know about that'
So you'll know there are some things which are difficult, especially when there are distractions? (she did like to witter on, and had shown no regard for giving Andy any extra time to absorb what she had been saying!)
'Yes I know that, he'll be fine if you just let him take his time' witter witter witter !!!!!!!!!!!!!!
Somewhat gobsmacked, I had to tell her we need to calm things down ( I could see Andy becoming agitated) and motioned with my hand in a downward manner.
She then became even more wittery.....and said 'everything was fine until you became aggressive' to which I replied I am not the one being aggressive - please stop speaking until we get this form completed.
That brought a retort from her of a PHFFFFF over her shoulder - you know, as we may do to a piece of dirt on our shoe !!!!
I turned back and gave the clipboard to Andy saying to have a go at it, and I'm here to pick up the pieces if he needs me.
This he did, although some of the answers were scored as a low level 1 where they should have been a definite 3.
However, we did our normal routine of a bite sized chunk - with example where needed - so that Andy could then give a Yes/No answer, as opposed to having to calculate 0-3.
The nurse left the room for a few minutes, and when she returned I can only say I felt like I'd stepped into a parallel universe!!
I think she must have had a personality transplant in those couple of minutes she was out of the room.
She resumed her seat at the desk, and proceeded to acknowledge how wonderfully well Andy & me worked as a team, that she had noticed how well I asked the question, used an example and approached the required answer from a whole different direction.
'It's wonderful when we see patients being helped like this, and very informative for us to see from a different perspective what is required, because we don't know what individual patients need'
'I can see you are a very caring person, and love your husband, it shows through in how easily you are willing to help him'
etc etc etc !!!!!
As you will all realise, I'm not posting this to blow my own trumpet....the reverse is true....like everyone else I loose it once in a while, and we all know what a bloomin' lot of hard work it is to figure out one method of coping......before things change and we have to start all over again....... but -
my reason for this post is to show that we must, must, must stand our ground against even the most highly 'qualified' medics if we know they are - not actually 'wrong' - but lacking in understanding of what OUR loved one or patient needs.
They know their job, I have no doubt.......BUT I KNOW MINE TOO.... so don't MESS with me!!!!!
Rant over folks...... we mst not allow ourselves to be downtrodden by those who don't always know better!!
Take care all,
lots of love, Necion. xx