"The story leading up to my failed back op. What a mess!"

If i can give some background first to paint the picture. Sorry if it seems long, it's all relevant & part of the jigsaw!)

1) I have renal failure, am on home haemodialysis (4.5 years) on the transplant list for 3.5 & under the care of Leicester NHS (nominally Loughborough hospital but run by Leicester general).

2) I have been diagnosed as having sleep apnea, under treatment but suspended, due to back pain, under Nottingham Queen's circle OPD. Once the pain is "controlled" I'm to advise so we can resume treatment.

3) The back issues have been known about for nigh on 2 decades & all that time I’ve been bounced from one physio to another! Only 3 years ago was I finally given an MRI (that was 2 years on from a car accident where in the end my renal consultant had to refer me for an x-ray & that clearly showed major pre-existing spinal damage!) No one was taking the pain seriously despite the employer’s Dr having determined on 2 separate occasions I was in no state to work, EVER AGAIN! That should put the pain in context (& that was 5 years ago!)

4) Through no fault of my own (I'm a council tenant), I clearly live in Leicestershire but since my postcode is DE12 Every Gov dept & NHS ASSUME I live in Derbyshire!

5) i/ My GP (a mile away) is ALSO in Leicestershire but has a DE12 postcode! Although I am told I have patient choice in my referrals, that rarely happens, I get what I'm given (invariably Burton upon Trent).

ii/ I also have issues with my surgery not reading / acting on letters sent by consultants & it's only if I get a copy that I ever know what's going on! A week after a letter I'm down there asking if they have the letter (as the denial starts there)! Have they read & actioned it (I get "do we need to?") When will it be done by? Shrug of shoulders!

iii/ My own GP cannot even see my blood results or care notes from the renal unit, hence he nor anyone in the surgery can see info about me & he asks how the **** he is supposed to be my primary care giver if he doesn’t know what the **** is going on! (Yes, quite rightly, he's pretty hacked off that it takes me pulling up my bloods on my phone for him to see!

iv/ Because I have complained to NHS England (for threats, incompetence, incorrect reading of a script change, etc!) The practice manager made a counter complaint (w/o advising me) & seems to have claimed it was OK to threaten to de-register me as a means to keep me in line! Since the nearest surgery is 10 miles away & I need someone to prescribe my meds & do referrals, it's pretty effective at doing that! I'm now petrified of complaining again, of even speaking to reception! I feel like I take my life in my hands each time I do!

All of those make a cocktail that's bad enough on its own. What I've discovered in digging just makes it worse!

6) In respect of my renal results, with the help of kidney care UK, we tried to complain to find out why my GP couldn't see my results. I'm told it went to the very top of RPV (Renal Patient View) admin & they said it can't be done. Apparently, it's compartmentalised by NHS area & if you're outside area, you can't & never will be able to see notes, even if it is your patient. No reason was given to us, nor was any possibility of a solution! So now I start to understand the implications of my GP being in the Derby area despite my renal care being Leicester! When asked straight how that helps my GP care for me, I was referred to the NHS, only we've no idea who to speak to! my renal team, my renal consultant, have all tried! To no avail! My GP is out of area & the surgery won't help!

Why do I tell you all this, well, it puts what happened last month in context! It shows I was aware of the issues & quite frankly, God help any patient not aware of this sort of thing going on & having multiple chronic conditions; I can easily see how people end up dying! I was really scared I could go that way too if something went wrong! As it turned out, it did! I consider myself lucky to be alive as a result!

So, to the issue the story is about! I'll start it 2 years ago. Already a long way into the whole sorry saga but things got worse, much worse!

Having been referred to yet ANOTHER physio about my back, I had demanded an MRI. As I kept putting it, how the hell can you try to fix what you don't even know you're dealing with? So I had an MRI done at Leicester. My GP agreed I should see a spinal consultant (it would be the 2nd time). He could not see the actual MRI as he was out of area, despite asking for it, all he had was a summary. (I had seen it though so could describe it). Despite asking for Leicester, for all the above reasons, about 18 months ago I get a letter telling me I'll be seen at Derby hospital!

As I recall, there was an initial discussion during which I was asked why I was referred w/o an MRI! Huh? So I explained & I was sent for another, this time Burton hospital! Fine! I still don't know if my GP ever saw that one either! I go back to see the spinal consultant, yes he'll put me on the list for an injection, could be 12 months though, given I was in tears most days, despite opiate pain killers, I wasn't impressed I was being made to wait so long, having had a fight to get this far! He said he'd put me down for a cancellation. Mentioned nothing to do with rules around the op though!

A few months later I get a call & letter, could I come in 2 days time? Sure, I'll need to drive though! That's the first time I learn I'm not allowed to drive home! Can't my other half drive me? My partner lives in the USA, so no! (Why do people assume?) Anyone else? With a day's notice? NO! Could I get a bus? NO, not unless you want me to leave now! Yes, it takes that long, we only get 7 buses a day & it would take 4 or 5 changes & 8 hours to do the 20 miles to Derby! Oh! Yes, oh! Could I get a taxi? & given I was & still am on benefits who would pay given DWP point blank refuse! Er, ..., oh! Well??? Could I arrange an ambulance? How? Could they? Point blank refusal!

(Take a step back & put yourself in my shoes at that moment! Within touching distance of getting some relief for my back & it still feels a million miles away. So I'm now in tears on the phone!) So they reiterate I can drive up but NOT back! What do I want to do? What can I do? In the end they agree to re-refer it. OK, what does that mean? We agree Burton is closer & I stand half a chance of getting a bus or at worst an affordable taxi there. Good. Only another bombshell about to drop, this person can't actually refer me, the GP has to so this person will do a letter sending it back to the GP asking & explaining why Burton needs pain clinic needs to deal with it! I was taken off the list at Derby & I waited.

About a fortnight later I get a call, btw, you're Burton, aren't you? No, this is Derby pain clinic! WHAT!!!! excuse me? How on earth did I get to you? Apparently I referred myself to them! The hell I did!!! I explained the last bit again. Oh! They check their notes, It seems Burton pain clinic no longer exists! You WHAT?! Since when? No idea! (No one can tell me who determined that mind but I suspect it has to be my surgery!) So lets say we ignore the transport issue, how long is the wait? Well, I'd need to be reassessed & then a 12 month wait! But I've already been assessed! Ah yes, but not by US! Yes, but you're in the same building! They knew but they wouldn't have access to my notes! I couldn't believe this! No flexibility either! How is this helping the patient?

So I ask can it be batted back & I'll ask it be sent to the Burton pain clinic! I can't! Derby will put a note on & send it back. About another fortnight later I hear from the Burton pain clinic. (I told them someone thought they didn't exist). We discuss what's happened & they agree to do the two assessments on the same day to speed things up. few months later I'm seen! Amongst other things, I point out the earlier issues, so they know about the CPAP & dialysis & communication issues. All noted I'm told! The consultant tells me I qualify & they'll be in touch! I get a letter around Christmas telling me I'm on the list & should be seen in a year! Hang on! Burton didn't say I went to the back of the queue! So I call up, discuss it & get told it's always a 12 month wait! But I'm put in for a cancellation slot & this person puts in a note about what the stand in consultant told (or didn't) tell me! I make it quite clear, stand-in or not, they should know the rules & make them clear!

Now we come to the 30th. So as you see, the lead up to this has been a constant, stressful battle! That's not even factoring in the constant battles with DWP, the stress of dialysis 4x a week & all that goes with it, other medical issues & my own depression!

After 8 months, I'm given a date. Having given up on other options, a friend, despite being a week away from their own major op, agrees to help in transport. (Why does NHS, etc. make it so hard?) I read notes carefully and adjust my dialysis appropriately. I Take off much less fluid than needed so I aim to stay hydrated despite the no fluid / food ruling (given I was only an injection under local I'm still not sure why the nil by mouth!) At the same time I've had amoxycillin 500mg due to a dental abscess. Given previous cases & a close family member lost their life via an abscess that infected the rest of his body whilst on dialysis, I was very concerned! I took one before I left, the 2nd to last of the course when I got home & last Wed morning!

By the time I leave, I'm feeling a bit dehydrated, I realise the impact that may have on my blood pressure so I make a point of telling the nurse (quite apart from not taking B.P. on my fistula arm, which the student tried to!) It was quite clear the nurses had absolutely no ideas about the renal failure, no notes, reference to my renal care, no knowledge of the impact, nothing! Once again I felt the panic rise.... I tried to repeat the information about the dehydration, don't worry, we'll keep an eye on you! I wasn't so convinced!

I tried to explain things to the surgeons, They made it quite clear they didn't have time to discuss (I'd been told I was first on the list, so I'd be first in, maybe 2pm, the reality was more like 3.30pm!) No explanation, no time, no estimated time given! Now, bear in mind I pointed out I was already feeling dehydrated, I'd been w/o fluid now for some 6 hours, my body was far from happy! No one seemed bothered!

I walk in to theatre (with the aid of my walking pole!) I'm asked to lie on my front & immediately ask for 2 pillows to support my abdomen due to the size of my kidneys (had the hospital had these notes & asked the right questions, they would have KNOWN this!) I'm told there isn't time & besides, it's likely the op would be done by the time they found some! I tried to protest but was ushered onto the table. I said I would be in pain from the compression of my oversize kidneys. You'll get anaesthesia & we'll be quick!

I felt my back being scrubbed. Needle 1, L5 on right side. " Oh ***** I felt that guys! *** that hurt! But I was totally ignored! Needle 2, L4 r.h.s. Again as the needle goes in I feel it but far far worse! I'm really screaming at them, all I get is could I please try to keep still! What!! I'm in pain! I'm actually starting to cry, only they can't see that! Needle 3 goes in (L3, r.h.s.) & not only do I scream so hard, I'm out of breath but realise I'm about to pass out! Given renal patients on home haemo MUST know the danger signs of when you're about to pass out from dehydration/low B.P. as it will kill, ESPECIALLY if it happens when you're on the machine & don't react! Hence when I say something I'm not joking, I'm deadly serious! Given I'd told people numerous times in the preceding few hours about being dehydrated & the renal failure, I was positively scared as I felt myself passing out! In those few seconds I was asked if I'd like to continue. I remember slurring I couldn't, or similar! What happened next is very very foggy but I know I was wheeled out (I only remember bits of that) & ended up back in the ward. I can only surmise I passed out a few times! Well, it seems the surgeons didn't seem to care! It took the nurse a few minutes to get a cuff on me, once I could move my right arm from under me! Even then my B.P. was so low I was told to stay put! From what I can gather it took the best part of an hour before I could actually sit properly on my own & was able to talk properly. I was asked by the nurse about dialysis & by the time I'd given an overview of what I did at home, on my own this nurse made it clear they understood why I acted as I did. Blimey, you do know your stuff, I guess you have to, they say! Too late now, why did no one listen earlier or have the notes they needed?

When I read the discharge notes, I was aghast! "Procedure abandoned after right side..." Well yes it might well have been but I warned you guys why & now you're making it sound like it's my fault! No one can tell me how long I'll need to wait for the other side to be done, if indeed it will be done! Almost a month on, no one has been in touch! I felt pretty much inconsequential when I was there, given the missing notes / lack of important information. Given the surgeons didn't listen to me, didn't come back to see me afterwards, I wasn't told when I'd go in, why I was late, & no follow up; I feel like I just don't matter to the whole system!

WHY can Burton hospital have NOTHING at all on something as serious as the renal failure & not even be interested in how it factored in! Apart from feeling inconsequential, ignored, I'm angry that in effect, my life was put in danger & no one seemed bothered!

I'd like to know if anything will be, indeed can be done! I could easily have died had I said nothing. Will it take an actual death to improve things?