I Have seen how Parkinson’s UK are campaigning to get medications on time. Which is excellent news.
I experienced a problem recently in hospital at wrote to the hospital’s CEO who said she would try and resolve the problem.
I have also reviewed the hospital on the NHS site so hopefully things will change for us and people will become aware of the importance of strict times and we will not be made to feel difficult. I have also Shared My Story On the Parkinson’s UK Site [email protected].
My Hospital Review:
Parkinson’s patients need medication on time
★★★
Rated 3 stars out of 5
by LPW - Posted on 02 January 2024
I stayed on ward one at this hospital. I suffer from parkinson’s disease. Medication should be given for parkinson’s at specific times. I asked a nurse for my medication which was over an hour and half late. She was extremely rude to me when I asked for my medication saying it was a joke I became very upset by her manner. I did contact the hospital because staff members should be aware of timing’s for parkinson’s medication
Hello LinWin, this is a subject that I’ve had experience of. My husband has Parkinson’s. Last year was admitted to hospital as he had a fall and although he wasn’t hurt by this, it was noted he was suffering from a UTI. Also he was in urgent need of his PD meds being reviewed. This was done while in hospital as his consultant came to visit him on the ward as he was holding his neurology clinic there that day. He hadn’t at that point been discharged, alhough he was much better and taking antibiotics for the UTI. The consultant said he would sign the notes to get him discharged as ‘hospital is not good for people with Parkinson’s if medically they don’t need to be there’. This is due to the fact that medication is rarely given on time and with the exact time between doses which is crucial for the meds to control symptoms efficiently. I found the staff to be mostly unaware of the need to keep to strict timings of my husband’s meds, despite the fact I’d written clear instructions on a sheet of paper highlighting the importance of this and the reason why this regime must be strictly adhered to. He had all the alarms on his phone and was capable of taking them himself but as they were locked in his drawer he couldn’t do this. I tried to visit when his meds were due and on almost every occasion I had to go and find staff to give him the meds. He takes Sinemet which shouldn’t be taken within an hour before or after eating (especially protein) but yet again this was totally ignored, even when I’d also highlighted this on his meds instruction! While I understand it can be difficult on a busy ward to keep on top of this, surely it must be possible to make sure all staff have some basic understanding of this most complex of diseases. People with PD will continue to suffer during any hospital admissions. This is simply not acceptable. We need a Parkinson’s nurse in every hospital who’s sole job would be to monitor those with Parkinson’s on the wards and make sure their meds are given on time every time. Sadly I know this is unlikely to happen any time soon… Best wishes. Jean
Yes Jean I totally agree with you there is little understanding of the need to take medications on time and staff are very unaware of this.
I do hope the CEO at the hospital I attended does do what she said and get staff trained in this field,
The staff nurse on the ward a t the time totally agreed with me and was very upset at the nurses attitude to me at the time. She did put a complaint in about the one nurse who said it was a joke because she had witnessed this herself and encouraged me to contact the CEO which I did.
Parkinsons patients need to be heard and understood. Hopefully this will happen eventually.
This is such a frustrating issue and the numerous attempts to make hospital staff aware of this don’t seem to have got us very far. Most hospitals will allow you to self medicate if you are well enough but what good is that if they lock them in your bedside cabinet drawer and you can’t get the key on time. I appreciate as has been said, ward staff are busy and the patient with PD’s medication timings will probably not be the same as that of the routine drugs round but it would only take a few minutes for a nurse to get the medication out for one patient, take it to them and mark the book. More to the point they need to understand we are not being awkward and we didn’t ask for the diagnosis that so rules our lives. I think at handover it should be established which nurse is to be responsible for this person’s medication and getting it to them on time; there can be no excuse then except in a dire emergency. The problem is they don’t tend to listen to what you are saying in an effort to help them manage your care and that is totally frustrating. I was continually being told I should be asleep when found reading at 2.00 am. If they can’t understand that I would love to be asleep like everyone else around me but Parkinson’s doesn’t work like that and anyway so what if I was awake, I wasn’t disturbing anyone. If they don’t get something like that which is of no problem to anyone else on the ward, then I don’t quite know what we have to do to get them to see the importance of timings for our medication. I very much fear this issue is going to run and run sadly.
Tot
I totally agree with everything you have said. I do hope staff will all be told about issue’s for people suffering from parkinson’s eventually. We are not been difficult which staff dont seem to understand.
I think all we can do LynnWin, is keep plugging away. I have already decided that if I find myself in this position again and they don’t bring my medication on time for say, three times, then I will make a formal complaint. Of course this does depend on my being able to manage that at the time and is not what I would choose to do, but formal complaints do have to follow the organisation’s laid down processes and it would be a way to emphasise the need to get the meds to any Parkinson’s patient on time since the results if this doesn’t happen, as I know only too well, can be disasterous.
Tot
Very much so. We shouldn’t have to complain but yes thats what we have to do to protect other people suffering from Parkinson’s. I hope eventually they will cover this issue on Emmerdale to try and help people understand.
Hopefully this issue will be sorted and we will be listened too.
Lynnwin
