Hospital stays


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 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 "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....


 lolbig grincool*/////////////////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