There's been a lot in the news over the last couple of days about how A&E departments are cracking under the strain of too many patients. And this weekend we got to see what's happening at first hand.
I had a GP appointment on Friday morning. Initially it had been simply to renew some prescriptions, but for the last few weeks my abdomen has been swelling up, and by the end of last week it was barely endurable. I can't stand up straight because it hurts too much, and I look pregnant. In fact, I can now only wear maternity tights (at my age! 64!) and even they are too restricting. From reading the information on the Mac website, I guessed that what I had was ascites, which is fluid collecting in the abdomen. Apparently this can happen in cancer, as cancer cells can get between the two layers lining the abdomen, and block fluid drainage.
By the time I got to see the GP I was in some distress, weepy and desperately hoping for some relief, which can apparently be given by draining off the fluid. My GP agreed, and said that she would book me into the hospital to have this procedure done. I went home, then was called by the practice nurse around midday and told to go to AMU (acute medical unit) at 4.00 pm, thus bypassing A&E queues. If only!
So we duly turned up at AMU at 4.00 pm, only to find that there were no beds and no prospect of a bed (in the case of AMU, you usually get put into a side room with a bed while waiting to be seen by a registrar). In our ignorance, we had chosen the busiest day of the year to go to A&E. Not only that, but all staff to whom I spoke subsequently said that it was the busiest day in 20 years! We were shown into a tiny waiting room absolutely crammed with people, some of whom were in serious pain and distress, and some of whom had serious chest infections. Apparently there is an epidemic of pneumonia at this particular hospital. Many people were standing because there were not enough chairs, and at least some people had been waiting since the previous day, including one man who was waiting for a lumbar puncture. It was like a scene from a refugee zone. Aside from one very grumpy and rude registrar, the staff were amazing - charming, kind and patient. How they do it, in the face of such chaos, I have no idea. One HCA in particular, who had already been on duty at least 9 hours without a break, and whose job was to manage the queue, prioritise cases and keep us all from rioting, was an absolute star. She even provided tea and sandwiches. Without her, anarchy would have ensued. And I saw her the next day, still at it and still smiling. She even remembered my name!
You could say that we were relatively lucky, in that our stay in the waiting room was only 7 hours. I had various tests such as blood tests, x-rays etc during this time, although not the essential ultrasound scan. The grumpy registrar told me firmly that I could have the ultrasound, tap and drainage on Saturday, so I would be found a bed for the night. This happened finally around 11.30 pm. Only it wasn't exactly a bed, but a trolley next to the nurses' station in CDU (clinical decisions unit, ie a holding pen). Over the next 24 hours I got quite fond of that trolley. The nurses kindly provided me with some screens, so I made myself a little bedroom with them, and was almost comfy, aside from the incessant noise, fluorescent lights and the absence of blankets and pillows (used my coat to keep warm and a rolled up sweater for a pillow).
But on Saturday morning I was told that ultrasound could not be performed over the weekend as the consultant radiologist did not work at the weekend. Surely they knew this on Friday? Well, anyway, I was offered the choice of staying in over the weekend or going home, in which case I would go to the bottom of the queue at A&E and could potentially face another 7 hours in the waiting room - and risk not getting a bed at all. Neither John nor I could bear to go through that again, so I elected to stay in. On Saturday night, I was unexpectedly moved to a bed in the urology ward, and there I stayed for three more days.
Three days of total frustration! Of course nothing happened all weekend. I was seen by a consultant on Monday morning, who also thought I had ascites. But when I had the ultrasound, I was shocked to hear that there was no fluid collecting at all. My problem turned out not to be ascites but hydronephrosis of the left kidney, in which urine collects in the kidney, thus causing it to swell, because the ureter gets blocked by something (in my case, I assume, by cancer cells). I guess this causes the swelling and pain in the abdomen. My consultant at Christies had mentioned this some time ago, but at that stage it hadn't been terribly serious. Now it's obviously got worse. The cure appears to be surgery to insert a stent in the ureter, which clearly was not something my local hospital would undertake.
So, if they couldn't do anything, I might as well go home, right? So I went back to the ward and packed. But oh no, the staff nurse came to tell me that someone up on high (the consultant? a registrar?) would not let me leave as he/she had decided to try and get a copy of the latest CT scan from Christies to ascertain exactly what was going on. Now, I know that these hospitals just don't talk to each other, and that getting the CT scan would be virtually impossible. There are systems in place which should make it happen, but in my experience I've never known them to work. So I was stuck there for another night. I put up with it with good grace, partly because I actually felt better in hospital, wearing a hospital gown which did not constrict my abdomen, lying around on the bed reading, having a junk diet of mainly toast and sandwiches which suits my weird bowels - ie no fruit and veg.
In the morning I saw the consultant again. It was clear that no one had made any attempt to communicate with the Christie or to get the CT scan. The consultant said that I might as well go home and that the most reliable way of their getting the ultrasound results to the Christie was to give them to me as I'm going up there tomorrow. So in our wonderful (not) integrated NHS system, it's apparently better to use patients as couriers than to rely on any other method of transferring information.
Final frustration: it took six hours from the time the consultant said I could go home until I actually got discharged - because of the paperwork required!
I wouldn't begin to presume to make informed observations about what's wrong with the NHS, because what I saw was only a small snapshot. But here is what I saw:
And that's just the tip of the iceberg.
In an ideal world, I would have had the ultrasound on Friday, when the consultant radiologist was there, and would have been released right away. OK, so they couldn't have cured my problem, and my abdomen would still be swollen and painful (as indeed it is now). But I would not have wasted valuable NHS time and space occupying a much-needed bed at considerable expense for three days.
So the next thing is our visit to Christies tomorrow to hear the result of last week's CT scan and to discuss the way forward (and hopefully to get some help with the swollen abdomen).
