"Internal politics and communication failings impacting patient care"

My father was admitted to the Ninewells Hospital Neurology ward (23a)  presenting with unusual neurological symptoms. What was initially thought to be a flare up of a previous diagnosis of Guillain-Barré syndrome (GBS) turned out to be much more sinister.

After various investigations including a lumbar puncture, an MRI found what was initially described as brain inflammation, however a subsequent meeting with a room full of medical professionals muted the possibility that it could be a brain tumour.

It was clear from the outset that there was a lot of confusion and differences of opinion between the neurologists and the neurosurgeons. My father’s case was frequently referred to as unusual and it was difficult to get a clear picture of his diagnosis and treatment plan.

Shortly after the possibility of a brain tumour was mentioned, my mother and I spoke with one of the doctors who was very helpful in explaining the difficulties in reaching a definitive diagnosis and he was clear to point out that it could still be inflammation, but the worst case scenario was that it was some form of brain cancer.

What followed was several weeks of trying various treatments to no avail, such as steroids, and ultimately a last-ditch attempt of plasma exchange. Throughout the entire ordeal there were many communication failings. This was very stressful for the family, not least my mother, who doesn’t drive and had to rely on the extremely unreliable public transport to and from Perth to get to the hospital in time for morning rounds.

My father was frequently spoken to when my mother was not present, and on countless occasions my mother was told that somebody would be coming to speak with her, only for them not to show up after she had waited all day. I note that part of the mission statement for ward 23a is to provide timely communication about care and treatment, we experienced the complete opposite of this.

We had particular trouble with a consultant. Who, on one particular morning, turned up at my father’s bedside to say that he would be getting a biopsy that day. This caused my father much distress, especially considering that it had already been discussed and agreed that he should not be spoken to about his condition alone. I feel it is completely unethical that a patient with such rapidly declining cognitive ability would be told something like this without a family member present.

Despite the consultant insisting that a biopsy was low risk, the neurosurgeons were never going to go ahead with the procedure because, in their own words, there was a huge risk of a bleed on the brain resulting in death. It was glaringly obvious to me that arguments were taking place behind the scenes, and these internal politics were directly impacting my father’s care.

When all treatment options had been exhausted my father was told he would be moving to Palliative Care. There were many delays in this happening which caused a great deal of stress during an already very difficult time. Again, with my mother being told several times that someone from the Palliative Care team would be over to see my father, only for them not to turn up.

Eventually, my father was transferred to Cornhill Hospice in Perth when a bed became available. He was very pleased to be moving but this was not the end of our problems. All of my father’s medication did not go with him, and it took several days before it was made available. This caused my father further distress and suffering that could have been avoided.

Another issue we encountered at the hospice was being told that a consultant would be coming to speak with my father shortly after he arrived, only for them to be completely unaware of this when I chased it up. When the consultant did eventually speak with my father they were very understanding and showed him a great deal of compassion. It is worth noting however that when discussing his symptoms with them they replied - because of the type of brain tumour you have... This is the first time we had heard a health care professional describing it so definitively.

Overall, the last few weeks of my father’s life could have been much less distressing if it hadn’t been for the issues I have mentioned above which greatly added to his suffering, as well as the family’s.

We would welcome a direct response from NHS Tayside regarding our experience, including evidence of the lessons learned and steps taken to ensure that these failings are not repeated. Should you require any further information about our experience, my mother took extensive notes during the time which she would be happy to share.

Finally, I would like to take this opportunity to thank the nurses, who we couldn’t have asked more of. They did an exceptional job caring for my father in spite of the problems we encountered with other members of the medical team.