Every cloud and all that.

Hi Simon. That’s good. I had the opposite experience. Couldn’t even see a GP until 2 years after bladder removal and my CNS didn’t contact me even when asked to by various hospital teams.
I know that I’m in the minority but I would have loved to have had the support that most on here have had.

Jane 

Me too Jane. I have never been able to get an appointment easily with my gp, been misdiagnosed over the phoned because I couldn’t get seen and landed up in hospital seriously ill. I’ve lost all faith that they will ever help me with anything, including multiple issues in the years post surgery, which they had no trace of on their own system. They will do anything to avoid seeing me face to face despite having cancer twice it seems. I can only dream of the help I see others getting. 

Sarah xx

That’s shocking Sarah. I had so many problems with our health centre post op and have lost faith too. Last time I saw a nurse down at the health centre and mentioned the allergic reactions she said e mail your symptoms we won’t need to see you. I haven’t bothered as they seem so disinterested in helping. It seems like we are in a similar situation.

Jane xx

I had a message rom the surgery yesterday to get a blood test to review my current medication which happens fairly regularly. Then once I’ve had this, the results will go on my nhs app and they’ll note that this has seen discussed with my gp and all is ok. Only it never is discussed with me, but it’s the way I discovered I had chronic kidney disease! It’s a good thing I was able to understand my results, but not everyone can. 

I’ve even been told I can’t have had my bladder removed as it doesn’t say so anywhere! You couldn’t make this stuff up! I’m sad that we’ve both been through so much but don’t get the support we need. 

Sarah xx

I'm sorry to hear for both of you that your experiences were both the opposite. 

It’s appalling that we have both been through life saving surgery, still have health problems and are not getting a decent standard of care. The GP who said what’s all this rubbish about you having cancer when she was looking at the wrong scan upset me the most. I didn’t even get an apology when she did look at the correct scan and said oh yes you do have cancer. That was over the phone. Having to take my discharge notes in so they could scan them into the system was another low point. I could hardly walk I was so weak as I’d only just come out of hospital. As you say you couldn’t make it up!

Love,

Jane xx

Oh, Jane-those are awful experiences to have to go through. I only contact the surgery when absolutely necessary and then it has to be via an app rather than phone.

I then have to send a picture before I can get any further. I have been sent to hospitals and clinics in 2 different counties by the gp, without being seen, been screamed at in a&e where she sent me and I waited for 5 hours where the consultant refused even to examine me, and if I didn’t have a partner who can drive me, I’d be stuck and presumably would never get a face to face appointment with anyone. 

For me, my misdiagnosis of a urine infection without being seen or ask to do a dip test was the worst thing because I was so ill and had no urine infection at all. When I got to hospital I was told my infection in my bile duct was so bad it was life threatening. It feels really scary if you know there is something wrong and you can’t get help…We did call an ambulance last time I was unwell and I’m glad I did, since it was when I had my stroke! 

Sarah xx

I’m glad you have a caring surgery Simon-that’s how it should be for us all.

Sarah xx

I feel for you Sarah you have been through so much and it must have been so scary to have been misdiagnosed. At our surgery you fill out an online request and then someone eventually gets back to you. Usually I’m happy to see the nurse but on the last two occasions I ticked the box to speak or see a GP. That was denied and then I got a telling off from the urologist for not seeing one. I told him I tried to see the doctor first and then when I started getting upset he finally believed me. You don’t need all this stress when you are ill. I’ve seen a few excellent locum GP's who sent me straight to hospital but I rarely contact the surgery. xx

It just seems a ridiculous situation for us after all we’ve been through but records are missing, the whole system is not joined up and we suffer for that. 

I saw a doctor last year who was new, just for a review,  and it was like a breath of fresh air-he actually listened, believed me, understood exactly the surgery I’d had as he’d been a registrar in urology under my own urology surgeon, and he updated my records. I’d love him to be my doctor all the time! 

Sarah xx