"Unsatisfactory & uncaring attitude"

I was recently involved with caring for a much loved friend during her journey on to end stage cancer. She was receiving palliative care and carers were in 4 times per day.

We were all quite surprised at how rapid her decline was after leaving the FVRH.

Her pain was finally under control with the medicines regime but her nausea & vomiting remained troublesome so the GP commenced Levomepromazine. She had completely stopped eating and was only managing small amounts of fluids.

She was having difficulty swallowing her much needed medication and the GP & district nurses were contacted as advised by the palliative care team. The GP decided it was now time to change the prescription on to a syringe driver and confirmed that she no longer needed to take the tablets. Because of that decision the next prescription that was required by that afternoon was now no longer needed. The district nurse did come out and managed to get her to swallow the pain killers and this held off starting syringe driver. The problem was we now had no oral meds to give her for pain. GP was contacted again and advised us to contact out of hours palliative nurses to come in to give her an injection in the evening from the just in case box.

I called the palliative out of hours number and spoke to a nurse. I began to explain what we were advised to do by the GP but this did not seem acceptable to the nurse who questioned why we had actually let her medication run out. I again tried to explain but the nurse did not appear to understand and informed me that they were not allowed to administer medication if the patient was comfortable as this was against the law.

I tried to explain that by 20:00 she may be feeling uncomfortable and needing her medication. The nurse told me that they did not have the capacity to send staff out to patients that were comfortable, as was recorded in her notes by the nurse that had been in earlier in the day. The nurse stated that they did not have an hour to spend with someone who was comfortable whilst other patients are writhing around their beds in agony.

The nurse accused me of being angry and complaining about the service because I commented that GP, Palliative care & district nurses did not appear to have been informed about current medications amendment & I was neither angry or complaining, I was concerned that we would have to wait until she was in pain before they would be prepared to come out. They also warned me that if family were administering oral morphine that we must record this. 

Despite my understanding that palliative care was all about keeping the patient as comfortable & pain free as possible during their last hours before dying, this was certainly not communicated. My mobile was on loud speak and unfortunately her son, grandson & granddaughter heard most of this & can confirm that at no time was I angry or complaining. In fact I have been informed that calls are recorded & I would urge that this call be listened to.

During the last weeks of our loved one's illness we were comforted by the fact that all of the care team we met were very kind and caring. As for the nurse I spoke with, I would not let them come anywhere near any future loved one with such an attitude. As a gate keeper they were excellent. But a caring, compassionate nurse ? That was not my sense.

Our loved one died at home with her family beside her.