NHS Rant.

WARNING - BLOODY LONG POST.

Well, I'm sure everyone reading this know about my little "illness" last year and whilst I was in hospital for the 10 weeks I was I had absolutely no complaints whatsoever about the care and attention I received whilst in hospital. I find it rather obscene that there are professional sportsmen (not just footballers) earning silly amounts of money a week whilst the people who really matter ie nurses, surgeons etc and even our lads fighting in Afghanistan earn a pittance compared to them. I owe my surgeon my life and for that I will always be indebted to him.

Now for the admin/aftercare side. Well all I can say is that it seems like "out of sight, out of mind". I had my first MRI (I have to have 1 every year for the next 5 years) in May 2008 and within 2 weeks I was told all was clear. I then received an appointment to see my surgeon in Oct 2008 and gave the go ahead to for the bone replacement op I need for my skull. At the time I gave the go ahead I was told it would all be done within 6 months. I attended the hospital again in early December for an x-ray of my head so they could make an exact match of the bone. Ok, you may say, that's not too bad, all seems ok so far. Well after the appointment in December I heard nothing, 6 months from October (April 09) passed, I heard nothing. The anniversary of my MRI scan (May 09) passed I heard nothing. I thought it may have meant 6 months from my head x-ray but when that time (Jun 09) passed and I had still heard nothing I rang the hospital. The first time I rang I got through to an answering machine, I left a message, still nothing, I rang again and this time got through to a real person and I explained the situation. I was told it would be chased up and I would receive something in the post within the next few days.

Well, June became July and I had still heard nothing. Early July I attended the Brain Tumour UK conference in Redditch where I met some lovely people and mentioned to some of the representatives there about my situation. I was given a phone number and email address of the head of PALS, an NHS complaints department so I sent an email to them and received a reply that they would chase things up. Low and behold a couple of weeks later I received a call from my surgeon in person who reassured me I had not been forgotten and I would be called for as soon as possible. I asked him why I had not been called in for the yearly MRI scan which should have been 2 months ago and he said he would chase thing up on that. Well I now felt more assured and patiently waited for the letter to arrive.

Well July became August and then August became September. I was on the verge of contacting PALS again when an appointment for my MRI finally arrived. It was the 10th of September, 16 months after my last scan. I had the scan and was told that I would receive the results WITHIN 2 WEEKS. Well here we go again, 2 weeks became 3 weeks, 3 weeks became 4 weeks NOTHING. So again, back on the phone and another message left on the answerphone, no return call. The following day, another message left on the answerphone, no return call. The following day and I actually get through to my surgeons secretary. Now this is the good bit. I ask her why it has been 4 weeks since my MRI scan and I had not had the results even though I was told it would be within 2 weeks. Her reply quote "Well I've been off for the last 2 weeks and nothing gets done when I'm away!!" Unbelievable.

I then pressed her asking if she knew the result of the scan and if she could let me know one way or the other over the phone. At first she said she could not tell me but as I was getting rather annoyed her words then were "Well I shouldn't really say this but the last line of the report says "SUGGESTS REOCCURRANCE OF MENINGIOMA. Well, that obviously shook me a bit but she said that she was surprised I had not received the results yet but would post them too me straight away. That was on the 8th of October. So I assumed the letter would arrive in the next day or two but nothing came until yesterday (21st October) when I received a letter saying I was being admitted to Hull Royal again on November 16th. So the tumour is coming back (or is it) as I still have not officially received the result and I am still awaiting my bone replacement op so for what reason was I being readmitted?

So today I ring Hull again. The first two times the line was engaged, the next 3 times the phone rings and rings and rings and no one answers. At last I get through and give my reference number and ask for what reason this re-admittance is for as I am still waiting official notification that the tumour is growing back (or is it). To me I would think it make perfect sense for the tumour to be removed again, if it is growing back (or isn't it) and then to do the bone replacement op as I cannot see the point of replacing the bone, stapling up my head again, letting it heal and then carving it open again but I was told that I am being re-admitted for the bone replacement op and they had no note of the result of my MRI scan!!!!!

Anyway, last Monday (9th) I went to Hull for a pre-op assessment and having got so fed up of trying to get any sense out of them over the phone I thought that if I was there in person then they would have to tell me straight. Well when I arrived the first thing I asked was regarding the result of the latest MRI, which I had still not received in the post, and the nurse said that there was no record of a recent MRI in my file. Anyway she agreed that having the replacement op would be pointless if the tumour was growing back but she promised me she would chase it up and get my surgeon or his secretary to ring me by Wednesday. Well today (Thurs) I had still heard nothing so I rang up and this time got straight through. I explained the situation an I was told again they had no record of a recent MRI scan in my file but she would get onto it and get someone to ring me back very shortly. Well about 15 minutes later the phone did ring. It was my surgeons registrar and I pointed out what I had been told over the phone that the latest MRI said "suggests reoccurrance of meningioma". He was rather taken aback as he said he had my MRI report in front of him and it was showing all clear. When I reitterated the last line I had been told he said that the last line actually said "suggests NO reoccurrance of Meningioma" I definitely know I did not mishear originally as I repeated the words back to her and to be honest I've been worried sick since I was told that.

So, the good news is my tumour IS NOT growing back but I cannot believe what a difference just 2 little letters can make to one sentence. So the bone replacement op will be going ahead next week, I go in on Monday (16th) and, if all goes well, I could be home on the Thursday (19th). When everything is finally over and done with then I will definitely be sending off a very strongly worded letter to the NHS complaints department, I may even ask Poojah to write it for me.

I'm sorry this has been such a long rambling note but it seems that one department of the NHS has absolutely no idea what a different department is doing even when it concerns the same bloody patient.

Les - well it's very good news that you don't have a relapse

However this shows what happens when you ignore all the "administration" and direct resources to "front line services". The whole place gets into a mess.

chuffed to bits no reaccurance....get it all off your chest....after all if you have all that rant still in your head they will never beable to put your lid back on ....best of luck mate

Les, my issue is not as serious as yours, all I've had to suffer is a temporarily knackered leg. However the pissing about and the false leads I've had to put up with are ridiculous. I've had to lose my rag twice to get the level of treatment I need to get myself back to being a fully functioning taxpayer again, and I am also in the process of making a formal complaint about the whole thing.

Good news then Les, everything crossed for you.
This is not a new thing though, last time i was in hospital (The Diana) for football injury, ankle break which was deemed to require screws i had to wait a few days in the hospital for swelling to go down before they would operate, one day my records were left on my bed by the doctor on his rounds, so to pass time i thought i would take a stroll down memory lane and have a read through my hospital appearances,
the expected various items were in there, a few broken bones, wrists and ankles, foot all work or football related, casualty and stitches following car accident, stitches following fight, concussion as a kid about 8 yrs old, all fine and as memory recalled.
However when i was very young i developed a cist, i vaguely remember after op but very little before but i carry the scar to this day but i have never known much more detail than that. It was done at the old grimsby general at the end of earl st/ freshney drive.
To the point..finally...in my records i was shocked to discover a little trail similar to yours but being late 60's this was letters from my doctor to childrens specialists at sheffield and wakefield, referring my case etc discussing options, the all new plastic surgery was considered as an after op option, but the chain of letters fell silent for around 14 months until another one from my doctor referring to the young master moosey club's position....the reply.....oh terribly sorry, seem to have forgotten about him, yes will get on with that right away !!!!
I did quiz my mum when she came to visit as to what had happened all those years ago and she said she had encountered a similar story to yours when chasing up the doctor as to what was happening with her "baby".
flipping NHS

I would praise the NHS, but after 999 HUNG UP ON ME because i didn't know the street name we were on (we were in a car, in chesterfield, at night, how the f@ck do i know where i am?) and repeatedly saying, 'erm, i'm not sure, i have no idea where we are' they decided to hang up on me, despite an actual real medical emergency  

Great news

Quoted from kamakazebear

I would praise the NHS, but after 999 HUNG UP ON ME because i didn't know the street name we were on (we were in a car, in chesterfield, at night, how the f@ck do i know where i am?) and repeatedly saying, 'erm, i'm not sure, i have no idea where we are' they decided to hang up on me, despite an actual real medical emergency  

Well what else were they to do? If you were in Chesterfield the call centre was probably somewhere like Buxton or Matlock.

Probably what happened was that there were several calls made (it happens a lot with mobiles) and so the call taker would be able to either see other calls coming in from the local area or someone sitting alongside them would get a call to the same incident.

If you'd been the ambulance crew you wouldn't have been impressed if your control centre had said - we got a call in Chesterfield, dunno where it is, caller wasn't sure where it was, seems to be from out of town?

Don't get me wrong the NHS is brilliant when you are actually in hospital but the aftercare and admin is shocking.

Quoted from Welwynmariner

Well what else were they to do? If you were in Chesterfield the call centre was probably somewhere like Buxton or Matlock.

Probably what happened was that there were several calls made (it happens a lot with mobiles) and so the call taker would be able to either see other calls coming in from the local area or someone sitting alongside them would get a call to the same incident.

If you'd been the ambulance crew you wouldn't have been impressed if your control centre had said - we got a call in Chesterfield, dunno where it is, caller wasn't sure where it was, seems to be from out of town?

i was explaining to her that we were looking for a place to stop and have a look, but you know, when your friend is in the front seat having terrible chest pains and trouble breathing you're not exactly in the most composed mood

ok she couldn't have told the ambulance that, but surely hanging up was not the right thing to do...