I have 2 members of our group here in FL that were admitted to hospital and were not given their correct meds on time or dosage. This seems to be a large problem that needs attention. I am trying to make contacts here in FL but get very little response to what I think is a big problem.
Regards;
ERIC
I was also in the hospital about a month ago and didn't get my meds on time. Very frustrating. I was later told that some hospitals will allow you to bring these meds from home and keep them bedside. Next time I will ask!
By the way.......I am also in Florida.
When I spent the night in a hospital in Ocala, Florida they let me bring my own meds and take them when I needed to.
I got the hospital kit from The National Parkinson Foundation's Aware in Care campaign at awareincare.org or call 1.800.4PD.INFO (473.4636), Fortunately I have not had a chance to need it.
Do you have an aware in care hospital kit? It contains info you need when you are hospitalized. The kit contains literature with lists of meds to avoid and which ones are safe. It also explain how important it is to get their meds on time. It is also helpful to have a strong advocate with you who can make sure you get your meds son time.
Do you have a support Group? Also try contacting the Parkinson's Disease Foundation at pdf.org
Never ever spend night in hospital without a family member or friend with yowl
Problem in UK but one that is being challenged. I am a retired nurse and have tried to spread the word but difficult. education is needed amongst medical staff. Parkinson UK have been addressing this issue on getting it on time, some slight improvement made but a long way to go, patients and carers need to speak out to staff on admission to hospital and keep on nagging if not it does not happen Keep striving, and take care.
It is my understanding that:-
In the UK each hospital has a PALs department which is supposed to act as a patient advocacy service. They are your first port of call.
Many hospitals have PD link nurses but they are not always given the status they need to effect change.
In addition, Parkinson’s UK will take calls about the problems in hospitals and advise you. They have education teams in each region and they might be able to improve the services in hospitals although perhaps too late for individual cases.
Parkinson’s nurses in the local area can also advise and depending on their work load and employment terms might be able to come out to mediate in difficulties.
Parkinson's UK also has a 'Get It On Time' kit designed to have all you need for a stay in hospital.
I think a B****y minded relative or carer always help. One who is prepared to call a spade a spade in the politest of terms.
I hope I have been factually correct but I welcome any more information on the subject as I will have to be that relative at some stage.
Sue
My mother with PD was in the hospital in Naples, FL for 4 days having a feeding tube put in and then recovering and then in a rehabilitative nursing home for a month. The level of care at both places was HORRIBLE and that was with me or another family member constantly asking for the meds and complaining. They supposedly allow themselves an hour window on either side of the correct time of dosage, after that it is considered late. It was such a frustrating experience! My mother was admitted to the hospital because she was literally starving to death. She literally cannot swallow and one day they did not give her her first tube feeding of the day until 1PM!!! What if I had not been there asking and asking about when she was going to be fed? Would they just blow it off? My heart breaks for people who are in the hospitals alone without an advocate. God knows what level of treatment they are receiving.
I had fallen and was out for 2 or 3 mins. My husband rushed me to emergancy. THey took a complete MRI and body scan and found nothing. THe emergenccy Physicians Assistant told me I had to stay one night in the hospital for observation to rule out heart attack. I told him he could call my cardiac doctor who would tell him my heart is fine. He wouldn't do that. So I was sent up to the cardio ward. The beds in that ward turn and wave up and down. THis kept the blood circulating for heaqrt patients. I had a concussion and PD and that was the lAST THING i NEEDED. I asked for a new bed but they said that was all there was on the floor. SO laying down made me sick to my stomach. I phoned the nurses station to ask for bag of ice> THe nurse said ,"What will you do with it? Put it on your heart?" "no it is for my head" I didn't get one. About an hour later I called again and asked for ice. They came and I told them I had bumps on my head from my fall. THey said the fall was not on my chart. Then a nurse came to my room and asked when I took my evening meds. I told her in fifteen mins. SHe said ;I had to take the ones from the hospital pharmacy. I told her to hurry because I felt an attack coming on. SHe came back from the pharmacy to tell me they only had one of m y three pills. SHe told me to take it;. I said no they need to be taken together SHe asked what they were for and I toId I had PD> SHe said it wasn't on my chart. I told her i must have been cured then. I took my meds from home and she ran out of the room in a huff. THe night wAS PURE HELL. thEY GAVE ME A LOW SODIUM DIEt which is the opposite of what i eat. A hospital doctor came in to see me. I told him I had PD. He left my room to read up on it on a computer. WHen he returned he asked me "Did you know that PD is not curable?" No one knew anything about Parkinsons. THE emergancy PA wrote on my chart that i needed P T before they would let me go home because my gait was off. I told the doctor if I stayed there until that was fixed I"D be there the rest of my life.. It was a horrble experience. I hope we can do something to get hospitals to enlighten their staff' of our diseae. Be prepared.
Staying up later than usual
Increasing salt intake and meds
PD meds daily schedule
