Communication

Brenda was left very upset after one particular trip to the hospital during her time on palbociclib.  Our daughter attended with her that day and everything seemed normal. Brenda was in for a routine appointment and had to go to the pharmacy afterwards to pick up her usual prescription. They were about to leave the building when they were approached by the pharmacist to advise them that an error had been made with the prescription. Brenda stated that there was no error as she had already checked the medication, and it was correct. The pharmacist assured Brenda that the dosage was wrong. Her dosage had been reduced by her oncologist and they didn’t think to communicate this to her. We raised this with her team and explained the impact this kind of lack of communication had. They weren’t interested and just continued to explain why the dosage was reduced, rather than explain why they hadn’t discussed the reduced dosage with her prior to her collecting her next prescription.

Brendas treatment continued but with no real sense of direction, communication or consistency. She rarely met with the same oncologist. During each appointment, the doctors that appeared in front of us looked like they were scrambling to read through her notes during the appointment and often had to leave the room to speak to other doctors that perhaps had seen Brenda previously. She regularly left the appointments feeling anxious, concerned and uncertain of her future.

 During a consultation with one of the doctors, Brenda was informed that her liver tumours were starting to show signs of progression and that her current treatment was no longer effective. Thankfully, the cancer in her bones was still stable at this point. We enquired about further testing or biopsies, to be told that it wasn’t necessary.  We had been advised prior to this that systemic treatment would treat all areas of cancer and that if one area was responding well, and others advancing, this would be a prompt for further investigations into grading and type to ensure she was on the best course of treatment. When we raised this point, we were told it was not a requirement. Brenda continued struggling with trust and confidence in her team due to the continued contradictions.

During an appointment earlier in her treatment, Brenda was advised that when palbociclib ceased being effective it was possible it could be reinstated in her treatment. Initially when it was first licensed in the UK for cancer therapy, the license was granted for first line treatment only. The doctor advised that licensing conditions had been altered, stating that Palbociclib is effective at any stage of cancer treatment and had already been proven to be effective with patients that had previously been treated with the drug. However, this was contradicted at a later consultation with the professor.

The intention of Brendas story is to highlight mistakes, failures and incompetencies in her treatment to raise awareness and to encourage you to advocate for yourself. Be assertive. Challenge and question things that you don’t understand or agree with. Be as involved as possible in the decisions being made on YOUR care.

As mentioned already, one of the most challenging aspects of Brendas care was the inconsistency in doctors – not knowing who we would be meeting with from one week to the next. There is one particular appointment that stands out. We were extremely anxious this day, and to our surprise, a very old doctor appeared and introduced himself. What happened next was nothing short of disgraceful. He left the appointment on four occasions to discuss details of Brendas treatment with a senior registrar. He was not prepared for the appointment and didn’t have a clue what was going on. Brenda was upset that her team had passed to someone who was no prepared in any way for the appointment. Shortly afterwards I made a complaint to Brendas professor on her behalf. We had had enough by that point.

 Her professor agreed to a second appointment and noted it as a second opinion. We met with him approximately a week later and he apologised, stating that our poor consultation with the elderly doctor was another indication of the situation the NHS are in.