Are you surprised by lack of education ab... - Cure Parkinson's

Cure Parkinson's

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Are you surprised by lack of education about PD by healthcare providers (except physicians) particularly in hospitals? How can we help?

purplelady13 profile image
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purplelady13
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There is a free kit you can order through the PDF @ parkinson.org! It's called "Aware in Care." Order it and look through it and be prepared for the next hospital stay. It will help a lot. Hope this helps you!

Blessings,

Carol <><

purplelady13 profile image
purplelady13 in reply to

Thank you very much! Blessings to you as well. Have a great weekend!

in reply to

I ordered this for my husband who has PD and it is a very nice kit. I did use it for his last hospital stay and it made the medical people aware of his condition but he still didn't get his meds on time. He got them with no problem, but just not on the schedule he was use to so I think it threw his system out of balance. I agree, all medical personnel should be given much more info on this disease. I mentioned this in the hospital survey I was sent!

soup profile image
soup

We are in England and my husband, with Parkinson's, has volunteered to be involved with the training of doctors at the local teaching hospital. He acts himself, a person with Parkinson's, and makes them work to arrive at a diagnosis or to deal with a change in his symptoms as might be seen at an accident and emergency department of a hospital.

He really enjoys it and is amazed by the varying standards of knowledge and people skills displayed.

purplelady13 profile image
purplelady13 in reply to soup

Thank you very much! Great idea!

caseyjones profile image
caseyjones

I always thought if the national Parkinson Foundation should go across the country to the awareness of Parkinson Disease,Many times I have had bad encounters staying in Hospital's and having test done for Scopes for the Colon and other ones,I showed up with the bag of awareness and telling them when my pills are needed,The nurse's take the Pill's and send them down to the hospital Pharmacy to check the pill's to see if they are what they are Parkinsons Meds,Can't blame them they have to cover them self's,But by this time start to going into a off period and nurses and ER Doctors asking family members what going on and they tell them he's going into a off period and needs his pills on time,The bottle I keep in my pocket all the time,My wife gives me one without asking and doesn't care what they say,My wife know the pain and the other things I go threw.The ER Doctor said Im sorry,I didn't know what happens without the meds,He said we learn from you and was happy and interested to learn about Parkinsons from me.Yes education on parkinsons is needed badly in hospital's even it's just a information kit sent to staff members.

purplelady13 profile image
purplelady13 in reply to caseyjones

Thank you very much. Glad to know that I'm not alone in my feelings!

in reply to caseyjones

Great idea! Why can't this reply you wrote her be sent to PDF! So well said! Go for it!

Blessings,

Carol<><

I recently had a very bad episode of shaking and was quite ill with it. My friend who had never seen me like that and rang my gp to visit me and the reply was 'I don't know anything about Parkinson's so there is no point'. What can you say!!!!!!!!!!!!

First we have to get the GPs to recognise the problems associated with it.

PatV profile image
PatV

Yes, but I carry my hospital kit with me which explains PD to medical staff.

available from PD foundation

honeycombe3 profile image
honeycombe3

Hi all,

Soup what a brilliant idea!! Lamenting the inadequacies of the system is wasted energy. Oldtyke let's put the horse before the cart. GPs can't act in any effective way until they have a baseline of recognition/symptoms/treatments from which to make a start. As Soup's husband volunteers in a teaching hospital & all doctors (UK) spend some time - however short - on each medical discipline then this is bound to have an albeit minute positive effect.. Having spent over 40 yrs working with families including children with the entire spectrum of special needs I am only too aware of the lack of formal medical training in anything 'out of the ordinary' My school(s) & support service ran such courses for professionals up & including consultants. (Basic training time for ALL special needs was 3 days).

I think the hospital packs are a great idea but I'm not sure whether they are from UK., although I'm sure they're available if requested..

soup profile image
soup

You can order a Get it in Time wash kit from Parkinson's UK. There are also Parkinson's UK publications specifically for professionals that you can go armed with or to drop a hint to your GP with.

Here are the links to the correct page on the Parkinson's UK website.

parkinsons.org.uk/advice/pu...

parkinsons.org.uk/advice/pu...

Parkinson's UK have a team of educators who can make contact with care homes, GP clusters, hospital teams etc to raise awareness of the needs of people with Parkinson's in their specific health setting.

Sometimes it is more helpful for a GP to admit they know nothing about Parkinson's than to insist on giving you treatment before diagnosis or on change of symptoms.

Sue

honeycombe3 profile image
honeycombe3

Sue (soup),

Thanks.

Gladyscon1 profile image
Gladyscon1

In response to this question and that asking what foods to avoid while taking Sinemet, I heartily agree with avoiding food, especially protein, one hour before and two hours after a meal. I was just released from a rehab hospitalization of almost six weeks during which I found the nursing staff and whatever authority was responsible for ordering my meds, did not seem to know the importance of timing the medication to between meals. They most often brought the Sinemet almost simultaneous with meals. I suffered tremors for the first time, several times a day and left the hospital in worse condition - as far as my inner feelings were concerned - than when I entered.

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