"Parkinsons patient need for meds ignored in Treliske"

About: Royal Cornwall Hospital (Treliske) (Oncology)

(as a friend),

A friend with Parkinson's also has cancer. I would like to highlight the experience he had this week in Treliske hospital.

We have known some time that he has cancer, as well as his fairly well developed Parkinson's disease. I don't know exactly what doses he is taking, but he has been showing typical symptoms of stiffness, stop and go, and dyskinesia. Only a short time ago, he had a Parkinson's nurse advising him on the dosages, so he is well up-to-date.

He was admitted to Treliske hospital this week by his doctor with severe pain, which was not controlled by morphine injection. He complained about serious pains in his chest, which the medical people did not believe, because they said that someone with such pain in his chest would be still and not keep moving! They did not realise that his movements were due to the dyskinesia influenced by their depriving him of his Parkinson's medicine.

His wife told the staff that he really needed his Parkinson's medicine, but they didn't listen to her. Eventually they came to the conclusion that he did need some Parkinson's medicine after all, but would not accept any medicine from the blister packs she had with her. Instead, they ordered medicine from their in-house (? ) pharmacy, which, of course, took some time to dispense and get to him.

Because of his uncontrolled movements which were not treated, he underwent immeasurably more pain than he might have done. The oncologist eventually told him that the cancer was such that movements made pain much worse! He told me that he had never ever experienced such terrible pain as he had during those first days in hospital. And I know from his background that this man is not a wimp – far from it!

On the other side, he told me that the staff there in the ward were wonderful and couldn't do enough for him, even though they were overstretched. So we can see that the problem is not that the nurses or doctors were callous, but rather that they did not understand the situation.

I wrote a comment which I put in the comments box at the entrance to Treliske hospital. However, I also feel it is important that this be addressed at the highest appropriate level in the hospital administration.

I wonder if it is possible to draft a sort of protocol to which doctors and nurses can refer if they receive a patient in any ward who claims to have Parkinson's. If this were a laminated sheet which was affixed to a wall near the nurses station, then this could be referred to at any time and instructions followed. I don't think it is realistic to fully educate all the nursing staff about it, but rather give instructions as to how to handle it if it arises.

I do realise, of course, that at times there are interactions between different medicines, and these need to be taken into account. However, the word of the patient or of the patient's carer should be taken seriously in such situations and not minimised or ignored, as is sometimes the case.

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