Ashdown Forest Health Centre 2018-06-30 Person 3 5 0

I have been with the surgery for 50 years and due to NHS rules the service has got very disjointed. I complained of blood in my urine about 9 months ago and was given antibiotics. This happened many times. Sometimes it happened at weekends and by drinking loads of water I cleared it for a week or two. Gradually it got worse and I kept visiting the surgery and one Friday Dr.Cannon met me at the back door with antibiotics and said "this has been going on too long. We should refer you". That week I visited the surgery again and saw yet another Dr who prescribed a week of antibiotics but was eventually referred to P.Royal and underwent a flexible cystoscopy when a huge tumour was discovered in my bladder. I had a pre-ops appt for the following Friday but got retention and clots so rang 111 in the evening and they told me to go to A and E. My daughter happened to be staying (I live on my own) and she got her 3 year old son up and took me to A & E at P.Royal. If we had called an ambulance it would have taken ages and probably gone to Pembury. P.Royal took me in and kept me until they operated and then because a kidney was blocked I had to go to Brighton for a day for a stent and nephrostomy. I eventually came home this week but had to go to B'ton for a day to have the nephrostomy removed. Now, Sat., I have dark urine (probably blood again) and am worried because I started my Rivaroxaban this morning (as instructed). I will contact Macmillan nurses in the morning as 111 will probably tell me to go to A and E again. I just want to settle at home. If I had been referred earlier it could have saved a lot expense for NHS as the tumour could have been removed at an early stage. Another patient on my ward had had the same happen to her from a west Sussex surgery and her cancer has spread. I am awaiting the biopsy whilst holding my breath. The ward said everyone should be referred earlier. I am not blaming you - it is the system - and also I have to go to P.Royal for all blood tests etc because your samples go to Maidstone. It is MAD. Dr.del Mar always came round straight away when my husband came out of hospital but we never see anyone now. I am hoping I haven't got another infection or a bleed and am lucky to have such help from Macmillan. We all miss the personal care given by Dr.Sibley and his successors at the surgery. You all work so hard but it seems to be mis-directed due to the "system". I will try to get better and keep on living for a while.