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CLL Support Association
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Out of Hours Service

As CLL we have a comprised immune system and after treatment mine has never gone back to normal. Yesterday (Saturday) I developed a bladder infection. I tried during the day an over the counter remedy but it got increasingly worse and in th evening I phone my GP out of hours service. This too was closed and I was told to ring NHS111 which I did. I spoke a call center. The first person went through what was wrong we me and tried to transfer me to a medically trained person but couldn't, but rang back after only about 5-10 mins. I went through the whole thing again. They then asked about a hospital I had never heard of (after talking to this person she said she was nowhere near where I lived) I told her our nearest hospital. She then said that she needed to get in touch with my GP out of hours service who would refer me to the GP clinic at my local hospital. I asked why she could not do this herself but was told its the way the system works. The GP out of service then did ring back again no long delay about 5-10mins and gave me an appointment in an hours time. She then said that the appointment was only a guide and I could not understand what she then said. My husband spoke to her as I was becoming confused and feeling increasingly unwell. He said we would go to hospital straight away as we may be seen earlier. When we got to A & E my husdand dropped me off to find a parking space. However unbeknowned to me this enterence was now closed for refurbishment and signs directed me to another enterence. I became increasingly confused (you could walk around this hospital for hours if you do not know where you are going, during the day they have volenteers who man help desks) After some time I did find the new A & E. I went to book in but as the system was new although I was referred they couldn't book me in and the had to speak to their call center to do this. i was told that there shouldn't be a long wait as I was then next patient to be seen. There are three different queues at this A & E (its a major incident center) but as I was on my own (my husband was still trying to find the new A & E and me) and other people after me were being seen I asked if I was now correctly booked in but was told yes and that I was the next patient to be seen by this Dr. My name did come up and I was given very good care and treatment. This whole saga does show up what happens in real life. Many of these things were small but togeather made a bad situation worse. I did get what I needed in the end but it was dealing with lots of different people when I felt worse and worse and more and more confused. I was luck that all spoke good English as I now find different accents hard to grasp (I should say my husband's family are Irish and my own grandmother was from Northern Ireland and I find broad Irish accents very hard to understand now) So perhaps its a case of not getting ill after hours which is unrealistic.

6 Replies

Well that must have been very distressing at the time for you and your husband. Thanks jangreen for sharing that wake-up call for all of us! I hope by now you are feeling much better and that you'll be back to normal pronto. Good to hear you eventually did get what you needed.

I don't know if you've heard the news about a recent study that found that cranberry juice doesn't work for these infections?

If only we could train infections to only happen in office hours during the week...


O dear. I'm so sorry to hear about this. I can see how it all happened, and how very frustrating and upsetting for you... Quite frightening, too. Thankfully in your case it worked out OK in the end, but for some people, there might be more serious results. SURELY our NHS should work better than this...

Hopefully your bladder infection is getting better now. If you get bladder infections frequently (and can recognise one easily), I wonder if you could ask your GP for a prescription for antibiotics, to keep ready in case of further weekend infections?


Your one case shows in a nut shell how there's no joined up thinking in our health service. People keep saying it's because there are no longer any matrons - one tough person with an overall view. Our A and E depts certainly seem to lack a matron or a maitre d' authority figure as in a restaurant who the buck stops with.

I used to get many bladder infections until I was told at Barts to drink more water. Now for every cup of tea or coffee, I have a cup of water. It has really helped in prevention.


I hope you are feeling much better now. Your awful experience shows how dependent we are on what is essentially an erratic service. I had a bladder infection -passing blood- a few weeks ago. I phoned the surgery and got an appointment for later that morning. Luckily my GP is interested in CLL, took an immediate blood and urine tests which went by courier to the hospital. The GP phoned me next morning to say all was well. It should be like this for everyone, not just the lucky or for those who are conveniently ill during the working day.


Your story brings back an experience I had 10 years ago with a UTI which left me septic, right after being diagnosed with CLL and started on what was the wrong chemo for my particular case by a doctor who didn't know what he was doing, except my story comes from the US. I woke up with terrible chills. MY PC had labs done stat, which all came back as OK - something neither of us "gets" to this day. By evening the chills were worse and I felt absolutely terrible, so I called the oncologist. I got a doctor who was simply irritated that I was bothering him on a Friday evening. He told me to just go to the ER. I did. First I was told by the night guard that I would have to wait in the waiting room - a room full of coughing, sneezing, sick people. I didn't know much about CLL, but knew that I couldn't go in there and expose myself to more issues. I must have looked as bad as I felt - I was visibly shaking very hard with chills - because the guard got a chair for me in the hall, then got me in to be processed next. The one smart thing I did, leaving the house, was to grab the container with all of my medications. When the woman who was processing me asked about my medications I just handed the container to her. She was irritated that I didn't have a list to hand her. Under the circumstances, I thought I had done well to remember to have the information with me, one way or another. I was put in a room and waited, and waited, and waited. Down the hall there was a woman yelling that she knew she was a drunk, but she didn't care, she had to go home to her dog. I thought of all of my animals waiting for me at home while she wasted everyone's time. After about an hour a tech came in, took my blood pressure, which was 80/40, told me I had to lie down and left. A while later the nurses changed shifts and when my new nurse came in I asked if, considering my blood pressure, I shouldn't have a bag of fluids running, or something. He took one look at the machine, redid my blood pressure twice more, and then I found out that there is an emergency section to Emergency. I was assigned to Dr. Tweedy (that name just sticks) who spent the whole time he was examining me and processing me to be admitted complaining that he had too many patients, and how was he supposed to do his job with so many - a real confidence builder in "the system". I spent three days in the hospital and then insisted that I had to go home.

What I learned is first, get back to your doctor during the day, if you know something is wrong and be very vocal so that hopefully you don't have to deal with an ER. Just go and park in their office. Second, make a big stink if you know you need care and you aren't getting it. I should have dragged myself into the ER hall and made as much noise as the dunk until I got some of the attention she was stealing from other patients. If you don't get good care report it to everyone along the chain and ask to speak to supervisors as well. It won't change what happened to you, but it might make a difference for the next person.

As for keeping antibiotics at home, most doctors probably won't do that, because different organisms react to different medications. Every time a urine dip has shown an infection and my doctor has started an antibiotic while waiting for the culture to come back (insist on a culture!!!!) it turns out that that's the one the current infection is resistant to and I end up changing meds. When I had constant UTIs it became almost a joke between my nephrologist and me.

I hope you are feeling better by now. It's very frightening to know something is really wrong and have to fight "the system" no matter how your particular system works, to get the care you know you need.


Many thanks for all your kind words. As I still felt unwell Tues I rung my GP and got an ordinary appointment for Thurs. My husband thought that was too long to wait so I rung back the GP and got an emergency appointment for that day. I was glad that I did because I have now been given more antibiotics and had more samples taken to be tested. Hopefully it will clear up but the GP said that I had done the right thing. I have gotten good care and treatment but yes sometimes being a passive bystander isn't the right thing to do.


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