My mums close cousin was admitted to hospital yesterday as an emergency following a stroke. She has had parkinsons now for some 25 years.
my mum and her are like sisters and talk daily on the phone despite living at opposite ends of the country.
on admission she was given no meds and became stressed because of freezing episodes. The doctor explained that the stroke was the only thing being dealt with as it was priority. I kind of understand that.
mum has just called me to say she is being sent home today, because.......wait for it........they can't manage her parkinsons! Her Parkinsons nurse visited her twice which was reassuring, but this morning her husband had to tell a nurse how to administer her medication, I believe she is on an apo go pump, which had been set wrong.
I know every nurse in the country can't be a parkinsons expert, but I find this really, really scary.
Can't believe what I have just read..... I agree scary that a hospital can't deal with PD...sadly it isn't that rare!
Thank goodness her husband was there to instruct the nurses (who when my Mum was in hospital wouldn't let me access her drugs to check she was having the right ones...it turned out she wasn't!)
Unfortunately this scenario applies to other chronic conditions as well. A friend of mine has had Type 1 diabetes for more than twenty years and also is on a delivery pump. She recently to go in for a breast cancer op. and the ignorance of the doctors was quite stunning in one particular case where the doctor did not understand what I thought everybody knew that Diabetics often have to monitor adjust their med.constantly according to how they are. She ended up as high as a kite and screaming as she went into the op.theatre "You're going to kill me!!"
She (or I suppose it must have been her husband) ended up telephoning her consultant who intervened directly with the hospital staff.
The trouble they are so specialised - all the more reason to listen to the patient. Only today another friend whose husband is in hospital for heart problems, told me how she tried to explain when they kept trying to treat his "diarrhoea" that he had had the part of the bowel which solidifies the motions taken away because of bowel cancer and that they could try different remedies for a 12-month to no avail Only when she managed to talk to a nurse able to think out of the box and with the initiative to take it higher was the cancer specialist brought in and the heart specialist and a bit of joined up thinking started.
This story I have to respond to,,its so uneccesary for pd people to suffer this way I did while in our local hospital with a life threatening water infection,, it was the stuff of horror stories,, the staff would only give me my meds when the in trolly came round despite my pleas and warnings and so it was,, I was in pure agony no painkillers effective and on the last antibiotic death here i come,, no pd meds = 99% shut down so I would have shaken Mr G Reaper by the hand I was at the loo every 10 mins passing molten lead with a large amount of broken glass,,my situation was brought to the attention of senior staff and then my PD NURSE CONSULTANT who blasted every member of staff and reported the fact that I had to craw l on my hands and knees to the loo as I was paralysed 15yds in agony,, not nice so sh.t hit fan and changes were made which benefitted others,, e ven other hospitals in the area as I found when visiting another hosp for the dreaded turps op,, I was armed with a A4 sheet of paper with instructions for all staff, it was so effective the nurses and docs were coming to me for advice surely the most cost effective treatment enhancement in the history of the NHS 1A4 hand written note,,there must be more understanding of pd to prevent the truly awful events suffered by all on this thread,
I wish you well my friends OTan heavy
Sorry to hear of your hospital experience OTan heavy...another story for me to take to the panel setting up new standards for meds in hospital for PwP.
I am glad to be on the forum and learning about all these experiences - to add to the poor practice I know about first hand when my Mum was hospitalised.
Glad your PD nurse got things sorted and things improved...
Will do what I can to help improve things....
*/////////////////98999999999996 oops srry banged the duodopa pump against my and, this little HP does not like impacts of any kind, my LENOVO is much tougher and seems to shrug off abuse and believe me its had some knocks,both accidental and non, it is amazing the reliability of lap modern didgital tops sky, ha spoke too soon as you can see this pesky HEWLET/PACKARD will asemble sentances in the order it thinks they should be in and not the way I them cmma oded ro odrede ,there it goes again I have not corrected the mistakes so you can see y problem , oh I do ramble so sorry Keld so I will tell you the reason for this post with reference to my sad tale of woe in my last posting you should know that I have a world class team on side in the NTGHNEW ROLOGEE DEPT there its done it again I will give it a good thrashing if it continues, as I was saying the team at N T G H Jubilee wing have savend my life and are really on the ball I wont mention names as its not etty ket ( I KNOW I KNOW) I cant spell etiquette , etty ket etiquette,, oh I can , well theres a first, as I WAS saaying the folks who look after me are the best f the beast,, sorry best and that horrible exper robustience I had was dealt with in a obust or even r and asobust way oh this bl,,,,y machine and as a result a new teckneek was introwjuiced allowing flexibility wiedsth m eds add n I was asked to give talks every 4months to Doctors aaaaaa ND Nurses the subject PARKINSONS AND HOW TO DEAL WITH IT ON THE WARDS I relished the oppawtooonittty to help progress knawlidge of this horrible evil pig of a afficshun and eye woz shoccked at the lack of under stan in.HOSthis is just one HO misSPIAL,
Sorry abowt spilllig messtaiks eye left them to let you see the things i have to put up with oh one other thing my new bddy buddy NURSE SPECIALIST CONSULTANT has just rang to teell me she is visiting me at my home monady she is gorjuss so I look forward to her visits
Kindest Regards OTan heavy
Every hospital should know about PD and how to support patients with it...and if they don't should then seek to find out!!
Your story helps to highlight what can go wrong to then help direct what should happen!
Well done you on giving the talks...are you still able to give them - I am sure they helped staff know more about PD on the Wards and the consequences of bad meds management and understanding of PD.
I work with children with special needs and if a child has a difficulty I know nothing about, I read up on it and talk with the parents to learn about it so to help the child (and as a side effect it makes my job much easier to do!!) Surely that is not rocket science to behave like that!! Hospital staff can't all know about everything - but finding out isn't that hard - and an adult patient should be listened to as they know their own PD best!!
That is really scary about this story. And I think our government and hospitals should take more effictive action to deal with this kind of situation. Residual DNA Testing