All.Can Patient Survey

47 Patient stories Patient insights on cancer care: opportunities for improving efficiency Hanna * (Sweden) I saw a doctor after discovering blisters on the roof of my mouth. I had to fight to get an examination and was eventually sent to an ear, nose and throat clinic. It was easy for the doctor to spot the tumour and I was sent home; later, my doctor called me and told me it was malignant. I would rather have spoken face to face, so that I could have had someone to answer my questions. I was not given a clinical nurse or doctor after my diagnosis, and I had no one to talk to. At the hospital they did not show much sympathy for me and I felt I was annoying when I was seeking information. I was never involved in any discussion about different treatments. Everything went so quickly, and I had no other information – I had to search online for a lot of information about my diagnosis myself. After my surgery, my speech was very affected, which was a complete shock. This might have been communicated to me, but if it was, it was not in a way that I was able to understand due to the circumstances. I had severe issues with swallowing and could only consume liquids. I had to contact a nutritionist myself as I became malnourished because I couldn’t eat properly. I was given a speech therapist, who has been an enormous support. I wasn’t given any psychological support at all after the surgery – even my surgeon never found the time to see me afterwards – and I really needed someone because what had happened to my speech was so traumatic. Throughout my career, communication has been hugely important, and I am a very social person. The dates of my follow-up appointments are constantly changing, which is very hard for me as I am very anxious and nervous before them – if it was once or twice it would have been fine, but it happens all the time. As I haven’t been given any psychological support, it has affected my mental health. I feel like I haven’t been listened to; I have felt very lonely and not cared for. It has now been more than four and a half years, and I still haven’t been offered any support at all. I am so grateful to my family and friends for their support – I don’t know what I would have done without them. But I need someone to talk to outside of my friends and family. This is something that has never been discussed during my follow-ups. My treatment was very efficient – everything happened so fast, from my first visit to the surgery, so that worked out very well. But if I could change something, it would be that I would have had someone to talk to. That’s something I still need. * Names and some other identifying elements have been changed to protect patients’ anonymity.