All.Can Patient Survey

I was given amazing emotional support through the hospital’s charity. I’m having counselling, which I found out about through the research team. But this is the thing: there are all sorts of things available, but it is finding out about them. The counselling only came about from a nurse making a throwaway comment. Similarly, I found out there’s an acupuncture team, but only because the radiologists mentioned it. I’ve had some hideous experiences – like being told my cancer had spread by someone I’d never met before. Several times, I have been made to feel that I’m making things up. I’ve had to see doctors who know nothing about my disease and write incorrect follow-up notes. It takes weeks to unpick that sort of stuff – it’s a waste of time and energy. The computer systems are ridiculous. If I have to go into Accident & Emergency, I take a copy of all my scans and notes, as they won’t be able to access them. They won’t know what drug I’m on because they’ll never have heard of it. I’ve seen about 50 people over the last year. It can’t be that difficult to find someone to provide some continuity of care. Communication between departments shouldn’t be siloed. I once had genetic blood tests and they wouldn’t fax the form from one hospital to another, so I had to physically drive to one hospital, pick up a piece of paper, drive to the other hospital, wait for two hours for a blood test – and then they lost the test, so I had to do it again. It’s archaic – why can’t they just email my doctor? It would have been better if I’d been listened to. When people say you’re making it up, and you know something is wrong, you almost need your GP, or someone who knows you, to speak for you. I know that some people do make things up, and they have to deal with that, but I had a 10cm tumour. They should take patients seriously. I was made to feel like I was nothing from the moment I walked into the hospital. I was shouted at! I can still remember the nurse who did it – she was clearly having a really bad day, but that was no excuse. When you go into this profession, you have to be professional. Be nice! They should treat patients like people – that’s their biggest job. That’s what I would say to anyone coming into this: make them see you as a person. * Names and some other identifying elements have been changed to protect patients’ anonymity. 29 Patient insights on cancer care: opportunities for improving efficiency