NHS is actually a myth ? Really long. I am desperate. Please help.

[ArseHasFallenApart]

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?

Yes, known as 'gaming'

Also, thy system has no flexibility to allow for direct communication from patients which is also daft.
Don't set me off, I could rant for hours!

I would very strongly suggest that you have your core in as good a condition as it realistically can be because otherwise recovery form the best surgery in the world is going to be more difficult than it needs to be.
The aforementioned women's health physiotherapist or a good pilates teacher good show you some exercises you can do lying down, not weight bearing, while keeping your core in reasonable condition. If you are quite muscle otherwise and your core is shot, that can cause problems as the tone between different muscle groups will be too different.
As you say, we are not really designed to walk upright on 2 legs.
If you do some pelvic floor exercises and put your hands left and right on your groins near the middle, you feel your deep abdominal muscles tensing with every pelvic floor clench - so, doing PFE actually works your core.
There are safe core exercises out there for people with PGD.

Great Pacific I am taking this on board. I will do anything to get well. I don't take well to loafing about. DH is driven mad by my always being on the go. He says I am like a shark that must keep moving or else I will die!
I am fit, strong and active and more like a lad if I'm honest which has probably led me to this sorry state of affairs. I am always digging holes, mending fences, creosoting something, ringing the bells or bashing something with a mallet. I know pain and it is not psychosomatic. I got kicked in the thigh by a bullock once and I had a bottle of Duplocillin in the pocket of my overalls which made a good job of my leg. I washed the wound out with the hose, patted it dry and stitched it with Mersilk while it was still stinging. The scar looks like someone has botched a tattoo of a limp rose but I'm quite proud of it. I blood sampled 80 more bovines for brucella. IBR and EBL after my DIY surgery that day too. I aint the sort to imagine my arse is in two halves. I am no snowflake. I got the vet to take the stitches out though but it was cos I fancied him, not cos I'm nesh :)

I charged the Duplocillin to the farm account

This reminded me of something I went through a couple of years ago. I was ill, getting nowhere with my GP and requested a private referral via my insurance who did all the tests, diagnosed an uncommon condition and prescribed medication which worked. My GP initially agreed to prescribe the medication but my CCG had banned it due to it only being licensed for around a year at the time. It wasn't a cheap drug but having appealed (repeatedly!) to the CCG, they advised that it was not to do with the cost, it was due to the efficacy. Subjectively - according to clinical results - it fucking worked for me! I was infuriated. My private consultant couldn't prescribe the drug without ongoing monitoring and insurance companies won't pay for ongoing consultations. I can afford my monthly premiums for Bupa but not ongoing consultations and other tests in addition to this,
Both GP and consultant discussed and agreed the only option was to see consultant on the NHS. The NHS clinic insisted on a repeat of all the tests and then finally, I got to see my consultant and he prescribed the medication. What a waste of NHS time and resources and that's to say nothing of how unwell I felt whilst awaiting my medication.

Oh, I was not suggesting that your pain is psychosomatic in nature!

Just making the point that psychosomatic pain is not any less painful than physical pain and nobody ought to feel 'fobbed off' when a psychosomatic component is suggested.
And as far as pain management goes, any pain can be less unbearable for somebody who is in a good place psychologically.

The maternity physio I saw when things were bad when I was expecting DS3 mentioned how professional dancers/ballerinas can have problems with PGD because their pelvic floor/core muscles are TOO tight and it causes an imbalance of the forces pulling on various structure of their pelvis etc.
I just thought it was interesting (just like your info about various animals SI joints giving caused by trauma to protect the femur. Fascinating - although of no practical use to you whatsoever.

Hi Pacific It's Ok I know that isn't what you were suggesting :)

I have been 'gamed' though, good and proper. Feel like a right mug!

Wayfaring :(

My DDad was living with me as he had dementia. I got so run down that the district nurses arranged some respite care for him. Whilst in there he broke his hip. They delayed and delayed and delayed and delayed and all the while he was nil by mouth prepared for the op. Days I am talking here until he was so dehydrated he looked like an old tortoise. He had been prescribed a drip days before but hadn't been given it and I tried so hard to keep my cool but his skin was so tented and he was so subdued and his pee looked like Libby's Orange C I went nutty at the staff. They nailed him that night and got him out to another unit for re-hab where he thrived but he was treated shamefully IMHO. Just getting him in was an epic. He broke his hip at one in the morning but they didn't call an ambulance as they wanted to speak to me and they rang me at nine. I asked them to get him an ambo and when I got there they still hadn't. He had peed himself and was writhing in agony. I called an ambulance myself from the garden of the home using the number the home has supplied but when it arrived it was a St.Johns and he had to make the journey to hospital with no pain relief. It was from quarter to eleven AM until gone three before he had even got to an acute assessment ward. He did get pain relief whilst waiting though. This was in 2001 so things haven't improved in 16 years sadly.

A big thanks to everyone that has posted even Koala whom I suspect to be my Physiotherapissed. It has helped me get things into perspective and has been really educational too. Everyone have a good week except Koala who can go for CPD

Arse, I hope you will take this in the spirit I mean it, ie being helpful rather than accusatory.

I was, until a few years ago, one of those people who didn't stop, was always either doing something or planning something Worked far far too hard, didn't really "rest" even if I was ill, loved digging the garden even though it fucked me up the next day etc, so I know what you are saying.

If you are still acting like this yourself and doing things like lifting 50kg animals, you need to accept that you are not helping yourself. (It also makes people less sympathetic to the blame being attributed solely to the NHS delays!). You don't have a definite diagnosis but you definitely have pain and have to act accordingly. I'm not saying be inactive, I know that's just as bad, but core exercises, losing weight and slowing the fuck down will probably be really beneficial. I know it's shit, I know you'll probably think what's the point living life if I can't live it the way I want, but even if you make it a temporary measure, you have to re-adjust.

I bloody wish I had listened to all the people telling me this previously. I was advised to lose weight by a physio (and cried afterwards, I was so humiliated and upset, and swore I wouldn't go back and they were so unhelpful etc etc) but losing weight was actually one of the most helpful things I did, along with actually doing core stuff.

I am different I know as I actually have a progressive disease which couldn't have been diagnosed when I first presented, so although I look back at the years of me bouncing around the NHS in frustration, I don't feel any anger towards them. I do however feel a lot of anger towards myself for ignoring the signs and not adjusting earlier! I know it's shit, but at least if you know you have taken absolutely all the positive action you can to help yourself, it might ease the situation and also help you with your dealings in the NHS, as you know you have done everything you can.

I really hope you take this as not finger wagging but me just passing on what I learnt through my own sheer stubbornness and stupidity Pain management clinic was actually brilliant in helping me with this, funnily enough (I was a bit "why the fuck do I need to sit in a room full of whinging people and talk about how shit I feel, can't they just actually fix me" but they taught me loads of stuff and I accessed some good treatment too). I would definitely see if your GP can refer you asap, if you have a similar service.

Bumping again

And dear OP condense this and write to pals - are you clear in the exact treatment you need ?

The NHS are very poor with back pain and I dont quite know why

Sending healing

This thing

You could have literally written that post for me - really ! Do you have any good core exercises you could link on your tube ?

Stopfuckingshouting sorry if you are another stubborn person who now has shit health too

I'm not very expert on YouTube unlike my dc but if you look at pelvic tilt exercises on there, that's the one I find most helpful - as I can do it lying down! I have very poor balance or strength and limited mobility so can't do anything active like the kneeling or balancing on leg exercises. The stuff I do is more about posture than exercise, if that makes sense - the thing in the article below about leaning against the wall is also really good for me. I also put a tennis ball behind my back against the wall and rub it around (technical description there!)

Please note I have absolutely no medical qualifications whatsoever so perhaps don't take my advice but it was a NHS physio who gave me a sheet of posture exercises years ago, I don't know if they still provide them but they might be better to advise you than me

I have terrible posture as my joints are fucked, but I also hunch and slouch and tense due to the pain, so I tend to concentrate on doing that.

I used to run, I bloody loved running and haven't found anything to replace it, so doing my posture exercises is closest I suppose.

https://www.google.co.uk/amp/s/amp.theguardian.com/lifeandstyle/2014/feb/07/five-best-posture-exercises

I'm another one who would recommend the pain clinic. I've had several spinal blocks for my back condition and they really helped.

Arse, you won't like me saying this but I really wouldn't recommend chiropractors for your condition, especially if you don't have a formal diagnosis. Having your back manipulated can do more harm than good if you don't know for sure what is wrong.

Are you still working and doing all those things you mentioned in your last past? If you are able to do all the things you just mentioned then sorry to say it, but your condition really isn't that bad. Most people at the pain clinic I attended were unable to walk at all. There is no way, even on the strongest painkillers, that someone with really severe back/leg pain could even walk down the garden let alone paint a fence! I agree with thisthingcalledlove that you are not helping yourself by doing so much.

You are going to have to pay . Poor poor you. I would take out the £9k loan particularl if it keeps you your job as long term that will be more financial avantageous than losing the job and every day of pain is an issue (we are assuming here the surgery will work of course which it may not).

The NHS is good and bad. It is better than the systems in many other countries. My father spent £130k (life savings ) on his at home dementia care in his last year which is a bit much given he'd worked for the NHS as a doctor for 40 years but on the whole as a family we have had fairly good NHS experiences. I do choose to pay if things are taking a while (eg my son is having a few things done privately - verucca as his NHS treatment stopped for a year as they were busy and his acne but we usually start with the NHS and see how it goes.

I think you are in absolute agony and I would get that £600 injection ASAP and take out the £9k loan and get on with the surgery - nothing is worth all this pain b ut do check there is a good chance the surgery will actually work before you commit to pay for it. You may be able to fly abroad for a cheaper but just as good surgeon too by the way although do check very carefully.

Thanks - I think that a mix of core strength , losing weight (13 stone ) and decent physio will help me , and i smoke too not a lot but they do t help the healing . I will look at those clips and chase physio x

OP - loads of good advice here wishing you

I would definately get that Injectijb at the very least ??

Itsnoteastbeingdifferent. I used to be 21 stone. I then lost ten stone at Slimming World. I did NOT realise back in 2002 that fast weight loss could cause gallstones. I spent nearly a year in excrutiating pain before an op I received a letter in that time telling me i could expect to wait another year for the op. I was back and forth to A and E in that time, also had doctors coming out to give me morphine injections. (On Christmas Eve 2002 i was given a morphine injection and spent Christmas Day in hospital because i kept collapsing and couldnt stand. I did have a private consultation with a surgeon out of desperation. By this point i was actually considering suicide. After yet another admission to A and E and a two day hospital stay the same surgeon i saw privately promised i would be operated on within six weeks. He operated on me five weeks later. It was a year of hell.

I hope you are treated and are pain free soon OP

HI ThisThing and Silent No I am pretty immobile since January when it finally separated. I am 54. I first injured it when I was 29 by lifting a mower out of a boot of a car. That set up the issue and it would prang every coupe of years. I have had it reduced by a chiro on three occasions. I had no choice as I could not stand upright and stood an walked like Max Wall (you have to be of a certain age to know how Max Wall used to walk as part of his act) It was an instant cure. In a nutshell I have had long episodes of no issues of any sort but gradually the episodes have got closer and closer and it was evident it was a deteriorating situation as I went from Chiro having a hell of a job to get it back through it coming out and my being able to get it back by twisting myself into a pretzel and busting a move to it coming in and out like a tide and my normal move no longer keeping it in place.
Throughout all of this I have carried on with my life because when it's in between, it's good and I barely give it a thought but treat it with care. I think actually by staying really fit I have had a lot more use out of it than if I had not. It came out in September when I was putting a shoe on. I had a cluster and then nothing until January when I walked down the garden to let my hens out and as I walked back up the garden it went out for no obvious reason. I avoided A and E by taking morphine and diazepam, laid like a frog on my back with my heels up by my arse (which always seems to encourage it to relax and go back) but this time I could tell by the clunking and clicking that it was in but unstable. It has never ceased clicking since so I have to assume it is so worn now that without fixation to stop the for and aft movement it is forever going to flap about like a bog house door in a high wind? In the middle of the night when everything is warm relaxed and slack, I can move my hips and it feels like two fluted cookie cutters against each other in a corrugated sort of way.

When I shot forward in the car seat belt and my left leg went slightly more forward than my right and I felt it open and shut in the moment, I actually considered I was in a between episodes phase so this was astonishing to me. I guess it was degenerated but not enough to show symptoms yet maybe.

Part of why I am so angry is that I explained to the first consultant all of the above. How it's gone from a rare event to a totally dysfunctioning joint to the point I was getting pain on my right side as it was taking all the strain and yet his referral letter is glib and holds no sense of urgency. I put this down partially to his scepticism but even his scepticism makes no sense as he had attended a lecture presented by C, on the condition and the benefits of internal fixative surgery for the condition.

So to answer the questions no, I am now doing almost sweet FA. I can stand for about twenty minutes max. It is then too painful and I try not to stand much at all as I am seriously worried about the right side being adversely affected and my needing a further op to put that right too. I am not a high earner. Paying for private is a real bummer.

I've been waiting for almost three years for surgery on my spine. 5 years on morphine etc. trauma and orthopaedics have one of the longest waiting lists. I was due my 3rd pre op in December and yet again it was cancelled. Don't know what to say as it just shows how over stretched the NHS is.

Sunnysky I am beginning to realise there is a massive and largely hidden mass of people that are just waiting and deteriorating, waiting and deteriorating. By the time they get to people the cost has skyrocketted as there will be far more to do to get a good outcome. Crazy!

My uncle had agonising chest pains (early 2016) sought help from GP and hospital and was not taken seriously - the GP even actually told him his pain was imagined. It turned out he had lung cancer. He died in November.

Wow Magic

My uncle had agonising chest pains (early 2016) sought help from GP and hospital and was not taken seriously - the GP even actually told him his pain was imagined. It turned out he had lung cancer. He died in November.

I'm so sorry magic.

I once was watching loose women (dont judge me - i couldn't find the remote) and some sleb who's name i couldn't care to remember was talking about how she had stomach pains or something and the ambulance took ages to come out to her and it turned out she had sepsis or something. Obviously that's bad etc but it's very hard to spot to the most qualified of some medics. I'll always remember it because she said in the most sarcastic tone about the paramedics "when we rang for an update of where they were, we were told they were busy prioritising CHEST PAINS". Like they'd just replied "sorry love we can't come to you right now, we're dealing with someone with a broken toenail".

That proper pissed me off that did as it was scary for her yes but she obviously had no clue. I'm very glad the paramedics prioritised my dads chest pains given he was in the middle of having a heart attack!

I think the problem is with some medics is if you don't present as a textbook case they assume, wrongly sometimes, that it is all in your head / imagine / anxiety. A lot of the time it's not. As some medics have found to their detriment with me more than once.

I wonder what the NHS would look like if doctors were as accountable for their mistakes as food retailers and restaurateurs? I wish sometimes that GPs in particular could be audited for missed diagnoses and targeted for extra training or even getting their practices closed down if they were demonstrably unsafe enough. While I realise that it's not all down to individuals and that there's a huge political element involved, the authoritarian culture of 'doctor knows best' persists in some areas and is really problematic.

Galicia- the GP has sent to Physio, organised scans, referred to Ortho, and as we've now heard- couldn't refer to a particular consultant. GPs can suggest that something is urgent, but the specialists triage it and rank according to what they feel the need is. What exactly do you think the GP needs to be held to account on?

Forgive me for not RTFT, but one thing that jumps out from your OP is that your SI joint dysfunction is essentially self diagnosed? Ditto the instances when the joint is "completely separated" and you are "walking around with a broken pelvis".

I am not suggesting your pain is psychosomatic, but you're in a tricky situation when you have a chronic pain condition and a consultant's diagnosis does not match your self-diagnosis.

I think you either need to be open to accepting a different diagnosis, or going private to get the diagnosis you want.

I wonder what the NHS would look like if doctors were as accountable for their mistakes as food retailers and restaurateurs? I wish sometimes that GPs in particular could be audited for missed diagnoses and targeted for extra training or even getting their practices closed down if they were demonstrably unsafe enough. While I realise that it's not all down to individuals and that there's a huge political element involved, the authoritarian culture of 'doctor knows best' persists in some areas and is really problematic.

Every doctor registered undergoes annual appraisal by an external appraiser followed by 5 yearly revalidation, very strict criteria are required to pass this including Patient Satisfaction Questionnaires, Multisource feedback, Significant Event analysis, proof of 50 hours of professional development as a minimum annually etc etc. Masses of self-reflection and written interpretation of 'near misses' go on.
This system has been set up at huge cost some 13 years ago or so (?2004) and picked up less than a percent of doctors with 'concerns'.

There are plenty or 'rate your GP' websites available

There is no doubt that there are incompetent/rude/deliberately obstructive doctors (just like there are incompetent/rude/obstructive butcher, bakers and candlestick makers) and of course the balance of power is very different in the case of patients and doctors. IME (although maybe I would say that, being one of them ), most doctors want to help. You don't go in to the profession if you don't in principle want to improve outcomes, but cynicism and burning out is all too real and getting worse.

I think there have been plenty examples on this thread of patients being up against long, long waiting times due to lack of resources.

In my practice, our proportion of GP:Patients has been static in 20 years (while the practice population has grown older with more complex needs), in the same time the local hospital has increase its medical consultants from 6 to 23.
90% of patient contact happen in Primary Care for 9% of the funding.

The problem is far bigger than 'crap doctors' although they do exist.