Cancer care
The difficulty when you are on a cancer pathway is that there can be different departments involved and the communication between them can be poor as they work in isolation. It is so fragmented that each department then needed the full story to be repeated to them. You also fall through the gaps unless you are both confident and competent to advocate for your own health. It would be beneficial to have one person as your contact for all issues as once you are discharged by oncology there is no one to pick up the reins and in our experience ongoing check ups were missed by the hospital and only carried out once we chased. When on a trial it was lovely to have a specialist nurse and that provided the warmth and confidence, knowing there was someone to call to discuss any issues but once that wasn't an option it all fell a way. Staff varied, at one time there was an incredible nurse who was warm and approachable and would spend as much time as was needed talking things through and then the staff member changed and the whole attitude that came across was that they were incredibly busy and not that interested, resulting in a change in the way you as a patient and family engage with them. Staff need to be careful when explaining treatment plans and options to manage expectations. Clarity is so important, in our experience we were led to believe doing a treatment was almost the last step but during the process it failed which we were unaware could even happen and then staff were unable to explain what the next options were leaving us devastated. When we raised the issue with the Consultant, they had assumed by saying one thing about levels being high meant we understood that it might not work. You attend a clinic appointment knowing you won't be in there long but it does appear that the Consultant already knows what they are going to be saying to you and what medication they are going to give you however, the scripts and then medication take time to arrange and then collect, which when you are really not feeling well is very draining.