Realised this morning that I had heard nothing since my talk with the Nottingham Hospitals Complaints Department lady on 21st October. Although I have left the Marsden to deal with the Sisyphean task of getting copies of my old scans onto disc and down to them, I have still not had anything about all the other things I brought up in my complaint (misdiagnosis by two stages - Stage 2 when it was actually Stage 4, failure to mention until a year later the fact that 10% of my type do last longer than the "3-4 months" we'd been told as a certainty, conflicting recommendations of treatment brought to light only by my eagle eye falling on notes meant only for other healthcare professionals...). I rang Nottingham City Hospital, and asked to be put through to the Complaints Department.
A nice chap answered at the switchboard, but I suspected he was new, as it was some time before he put me through. Meanwhile I could hear all the background noises. This included a lot of heavy breathing, and I wondered if the poor chap should have been in a bed rather than at the desk - he didn't sound at all well. Eventually, after two intermissions of music, a lady answered saying it was the PALS. I explained that I might have been put through to the wrong extension as I had wanted the Complaints Department. "Well, they don't really have one," the lady said. "It's dealt with by the different departments. It would have come through to us."
I explained that I'd originally emailed PALS, had received no reply, so had chased it up, only to be told that they didn't deal with complaints about hospital treatment, and had forwarded it to the hospital, as detailed in my Lots of Fun in Nottingham blog. Now however the PALS lady sounded surprised, and said that they DO deal with this sort of thing. She conferred with a friend and I could hear them finding my complaint. "I'm going to put you through to Sharon _________ on Extension ______" she explained, as this person deals with the oncology department complaints. Next thing I was speaking to Sharon who said that an acknowledgement had been sent out to me (she'll send me a copy as I never received anything), and the results of the enquiry will be "in the trough" (sounded like this, and I imagined a bin of pig swill) on 24th November "but of course will take a few days to come through to you."
Hmm, odd this. I wish PALS would decide what they do and don't do. I remember approaching the PALS' desk when I first had the shock of misdiagnosis, and the two elderly ladies bridled with indignation, "We don't deal with THAT sort of thing. You'll have to talk to your consultant." They did deign to give me a timetable for a new bus service, which I walked half a mile across the hospital site to find out it didn't start running until the following week... Now I've got someone really au fait, and helpful!
Anyway, I await with fevered anticipation to see what the results bring. I think I have a fair idea - but maybe I'm doing them an injustice and I shall get an apology.
Hoping everyone is bearing up, as we say stoically. Loads of love xxxxx Penny
FormerMember
...this is all a plot to make you go away with your complaint unanswered!! How very frustrating for you. However I know what a determined person you are and I hope that very soon you will get : 1. An apology and 2. Some answers as to what has gone wrong. Best wishes, love Jools x
You are not alone. July 07 - routine urine test 'oh, there's blood in your urine' and tips it down the drain - I didn't think anything of it as the nurse was so blase. March 08 - visible blood in urine - sample straight to GP with a letter confirming there had been microscopic blood in my urine in July 07, 'probably nothing - we're do another test in 2 weeks' That second test was clear so it was ignored. May 08 - same story but this time referred - took 3 weeks to see a consultant and 4 weeks to have a biopsy done. Biopsy taken June 08, histology report took 4 weeks - just before we went on holiday, consultant said Grade 2 non aggressive cancer - very small - have removed it all, 82% of patients survive 5 yrs or more from this diagnosis so we will monitor you very carefully. 'any treatment?' I asked 'no, we've got it all - go and enjoy your holiday'.
Came back from holiday, reported to GP, pain when weeing and swollen leg on 3 to 4 occasions, plus a phone call to consultant who was on holiday, his scertary said speak to GP about being referred t someone else in his absence, did this 'just post op' they said, she said, try not to worry'.
First check up September 08 - work up, catheter alerted me to something not being quite right - ' sorry cancer has spread' says jr dr. 'you will probably need chemo followed by bladder removal but we're do a CT scan tomorrow'.
Saw consultant week after ' CT scan shows fluid around uterus and some deposits around right hip bone - we better do an ultrasound and bone scan first'
Two weeks later, in the consultants office armed with info on bladder removal ops - ' Ultrasound clear but scan shows secondary cancer - mainly left hip, some in pelvic bone and right hip' Note: now the left hip is worse, CT scan said right hip - eh???
' unable to operate, not curable but treatable, some people live 10-15 yrs with secondary bone cancer' ' bladder cancer - histology still say 'grade 2 non aggressive but that's not what we're seeing' - not quite that blunt but almost.
Saw oncologist a week later - ' over 60% chance of chemo working on tumours, 10/15% chance of cure' I now know cure means surviving 5 year which isn't great odds.
Started chemo October 08 and still plodding along.
The annoying thing is I didn't fit in to NICE guidelines and was therefore ignored - no one says 'hands up - made a mistake'
As for GP when I spoke to her ' Sorry to hear that, who would have thought this would happen?" Since then nothing from the surgery - perhaps I should ask for a copy of my notes and rattle a few cages!!
I'm still in total shock at the shambles of our surgery - it's almost time to name and shame!
You said it! I'm on my case at the moment still though, and I suppose due to my undying faith in humanity believe that eventually I shall get that one little word, "Sorry." LOL Loads of love to you, and it was wonderful to see you again. xxx Penny
OMG - this sounds absolutely horrific. I think you too should start jumping up and down (metaphorically speaking) as the way your case has been mis-handled is horrendous. I didn't complain at first because I thought "Anyone can make a mistake", and the Registrar was such a lovely person I didn't want to blight her career - but it's almost as though if one doesn't complain they go from bad to worse. Maybe "rattling a few cages" immediately gets one more attentive treatment in future!
I am very very sorry about your latest diagnosis. It is so so hard to come to terms with this sort of diagnosis: you definitely deserve a blog all of your own rather than being appended on mine, although we seem to be getting quite a collection on the site of errors and omissions, and particularly of cavalier attitudes in health professionals. As you say, no-one seems willing to put their hand up and apologise - which makes us feel worthless.
Am wishing you all the very very best with your treatment. I'm going to have a look at your profile - after I've rescued tonight's dinner from the clutches of my non-cooking partner.
Love to all, and especial hugs to you Creative xxxx Penny
I think Jools is right - they're trying to wear you down. Hang on in there Penny - I'm sure you'll win eventually, unless you get dizzy first from all this 'roundabouting'. So sorry to have missed you last weekend but hope to see you soon. Lots of love, Kate xxx
