Namechanged for this - it's identifying - I no longer care.
I have chronic issues with my sacroiliac joint (the joint where your sacrum at the base of your spine attaches to your pelvis). I went to my GP in March of 2015 as it had gone from slipping out every two or three years and my needing a Chiropractor to replace it to me being able to reduce it myself in a certain position and with pain relief/anti-inflammatory meds.
GP sent me to a Physiotherapist but she told me the condition I described did not exist. I politely told her that there was fixative surgery available for it (called the i-fuse system) and that I suspected that ultimately that is what I would need. She was adamant I was wrong. I returned twice more. On neither of these occasions had the P'ist even Googled my condition and refused to accept that SI joint dysfunction was a thing. On the third visit she hinted that she thought my condition may be psychosomatic despite that you could fry and egg on it. I felt that if she did not know about SI joint dysfunction how could she help me? I stopped going as I was getting worse not better and returned to my GP.
GP sent me to a local consultant orthopaedic surgeon - A.
By this time during the episodes of dysfunction, the two bones were completely separated and were grating against each other (crepitus)
A was also sceptical and sent me for MRI and Xrays. As during both of these I was still, there was no abnormality detectable by him on the images. A sent me to see a surgeon whom he had attended a lecture by regarding the i-fuse system repair of SI joints but A could not recall his name. This referral was on 17th Dec 2015.
I got my appointment after 36 weeks of waiting but as soon as I said sacroiliac joint the consultant (B) said a mistake had been made and that he was the wrong man for me. He was spinal and I needed pelvic and that he would see to it that I was moved over to the list of C, the correct consultant for me.
I then had three hospital admissions in three days. I am a hard nut but I had a cluster of episodes and was sent home with morphine and diazepam and told that hospital admissions for this would be my 'new normal'. A - the original referring surgeon was informed of my admissions.
After this, I rang to see where I was on the list to see C. I was on the general list and I asked to be moved to urgent as my condition was clearly deteriorating. This did not happen.
After another episode which was on a Friday night where frankly I needed hospital admission but took morphine and diazepam and toughed it out as getting an ambo here on a Friday would have been a stretch, I rang again to see how close I was to seeing C. I also got signed off work at this stage as the joint was and is completely separated - I have a fractured pelvis in essence. I begged my GP to help me, via a letter and I had a call that afternoon saying the GP had asked A to intervene on my behalf.
I was told I had only waited 14 weeks so they had reset the clock from when I saw B (at 36 weeks)!!!!!
I was gutted and rang the head of the orthopaedic unit at the hospital C works out of, explained I had actually been referred on the 17th Dec 2015 and I was given an appointment six weeks later ( the earliest I could be seen by him). This appointment was this Friday just gone (24th) I know this is identifying but I no longer care! So when I saw C I had waited 62 weeks.
C said I needed an injection in my SI joint, the result of which is diagnostic. The waiting list for this is three months. If my issue is diagnosed as SI joint, the waiting list for the op is a year! He would see me in 6 months.
I can only stand for about twenty minutes. I am in bed 90% of the time and have been so since early Jan when I got signed off work. My DH helps me shower and is caring for me generally but I nursed him through cancer in 2014 so he is cool with this - bless him!
So.....I said I can't wait a year!! I will be sacked from my job, I will be one big bedsore and addicted to diazepam and morphine by then. I am only on SSP now too of course. Also, worryingly, because the left side is separated entirely, the right side is now taking the strain and is starting to give me pain.
C said (cos I asked) I can have the injection done next week for £600 privately. I can have the op done in March for £9,500. I have made arrangements for the injection to be done privately as at least then I am formally diagnosed. The rest I need to think about as I would have to get a loan but if I am going to off work for a year (if my boss kept my job open which I doubt - it's a small company and a bit niche) I would lose the cost of the op in wages so logically I need to pay for the op don't I?
If I wait a year I will also inevitably have to have the other side repaired too? I am now on week one of that years wait so I guess I could pay for the left side to be repaired and use the NHS list one for the right side if that also needs doing providing they keep me on the list?
In all of this I asked to see the original referral letter from A sent 17th Dec 2015. I was astonished. It bore no real resemblance to the consultation where I had told him how my condition had gone from it dislocating rarely (and needing chiropractic) to frequently and it now being so slack I could get it back myself but consequently it also came out equally as easily and was utter utter agony in the process. That I was afraid to drive lest it dislocate (it is disabling. I see yellow spots and need gas and air just to get off the ground) ie I now needed to be dealt with urgently and that was back in 2015. He also got my profession wrong and the whole tone was flippant (but he was sceptical). Crucially, also, he had made no attempt to find out the name of the surgeon that deals with this problem so I could be seen by the correct person, just that he had attended a lecture by him in the past. This goes a long way to explaining why I was seen by B and not C in the first place at the 36 week stage.
I can walk short distances only. It grates. You can hear it. I can stand for 20 minutes before I can't bear the pain. I can't drive or function at all in any meaningful way. I can't work, earn money or pay tax (which I have done since 1979). I normally do 10 hour shifts with no breaks I am very fit and active ordinarily.
I don't smoke, I rarely drink. I am 5;4" and weighed 75k kilos at the beginning of this but have made an effort (to eat almost nothing as I am using no calories) and have lost three kilos as I know I need to be lighter to help with my recovery and re-hab so I am trying to do everything right.
A fortnight ago a neighbour who is twenty stone got shit faced on whiskey and fell down the steps to his lawn. He fractured a joint that was repaired the next day with pins and plates.
AIBU to actually believe that the NHS is not actually there? The free at the point of need stuff is nonsense. My point of need was in 2015. I have cost the NHS since then (admissions/drugs) and am looking likely to cost them an awful lot more. I am also not paying tax into the system either.
I feel bitter that I will have to pay for my own treatment or wait a year of being in bed nursed by my long suffering DH. DH's recent chest scan was not clear and he is probably looking at having an anomalous mass removed from his chest later this year (we are hoping it's not metastesized cancer from the primary removed in 2014?) He has had life changing family stuff to deal with over the winter too and we are living a nightmare right now with that alone.
I'm sorry this OP is immense but there have been so many mistakes made, I have made mistakes - I should have chased and checked and chased and checked. I don't know whether to be angry with A for the crummy initial letter and then doing nothing since despite being informed of my plight by the hospital last September and my GP this January. Cross with the hospital for re-setting the clock to zero or what?
Can anyone give me any advice on what to do to or do I just have to take out a loan and get myself mended, hope for the best and suck it up?