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?

Thanks Halfin I am going to be making some phone calls Monday but knowing the one with the best outcome for me is likely to be trying to get my op for less than nine and a half big ones. It's an eye opener for pillocks like me that stupidly thought that after working without breaks (apart from a six month residential course) since I left skool and paying my stamp even when self employed (like you do) I am going to be getting next to bugger all when I need it! It's sickening.

Thanks Belevino I shall look into that tomorrow. Lot's of people and companies making money in the background off the back of this broken system isn't there? A finance co offering interest free must be getting a kick back off the hospital or it wouldn't be worth doing would it? Hospital gets a client it wouldn't otherwise have so it's worth a gratuity I suppose? Lawyers. Private medics, Chiropractors. Rune fondlers all doing well out of it. We are all paying over and over so the system works in fact

Hi Playonwurtz I have one but I think I am too far gone for it to work. It sort of squishes me in side to side and it seems to make it more likely to displace laterally IYSWIM. I

You poor thing. Kepp on plugging on. I don't know what else to say

Yes I know what you mean. I hope you get the surgery and soon. I'm currently pregnant and can already - at just under 6 weeks - feel my si joint giving up. So I don't think I'll be far behind you!

sorry you're going through this, I can't imagine what agony you must be in.
In my experience, the only complaints that trusts take notice of are ones which mention the CQC or the medical director / senior staff at management level locally.

I think it's time to start shouting a bit louder. I hope you find some resolution.

I'm so sorry for what you have been through.

The only think I can suggest in additoin to the ideas above is that you go back to your GP and cry all over his surgery . Get your husband to go too and say that he can't cope with nursing you any more.

Your GP is the one who needs to contact surgeon C and get your clinical priority changed, as it's his waiting list you are on. I understand why you are phoning the hospital, but they won't put you up the list because of that.

Also ask if your GP if you can be referred to a specialist centre for this particular op.

And write to your MP, a sorter and more concise versoin of the above. Explain that you are now on the waiting list of consultant C with priority X and the waiting time is Y and you think you should be priority Z.

The best that can happen from the MP letter is that the consultant will get you in for another out patient appointment to assess you and change your priority if appropriate Or that he will take account of your GP letter.

Thanks GTS

I think you need to go back to the start. Go to another GP and get assessed. What you need above all else is a clear written diagnosis.

I also think you should write everything down as concisely as possible (worth working on editing down) and chronologically (ie by date). Then see a solicitor and get their advice.

Also contact PALs. You have been treated very badly and I would think it would be worth one more stab at addressing this before going private.

I hope your DH is ok. Your stress levels must be through the roof. Try and find some time to consciously relax amidst all this. Best of luck OP.

Oh man, Arse, that sounds very tough and rubbish!
I have very minor SI joint issues from time to time, nothing compared to yours by the sounds of it, and it is hideous when it comes on. Just for the record, I had an excellent physiotherapist in the past who has 'fixed' me several times - I think you have been unlucky at several points in your trajectory (not that stating that particular obvious is helpful to you, sorry).

I am also a GP and yes, IME the NHS is rubbish for non-lethal but quality-of-life-ruining conditions, and that is what you are up against. You are a victim of the crisis we are hearing about in the news, it is quite real unfortunately.
By all means contact PALS/write letters/get other to support you - if you get somewhere sadly that just means that your pain will be prioritised over somebody else's pain, but if that is what it takes for you - I'd go ahead too.

Another thought is to ask for a referral to a local Pain Clinic - they are typically run by anaesthetists who may consider a local block for you. These can give relief for weeks or sometimes months and get make waiting times more bearable.

Oh, wrt addition to morphine: you are unlikely to get addicted to them as you are taking them for pain. And presumably if you were not in pain, you'd not take them. Usually as people get better they reduce their morphine just fine and stop in due course (as long as they don't end up taking them not for pain but just for that nice fuzzy warm feeling...).

V best of luck

I get exactly what you are saying, my council have closed down the majority of mental health services.

However, I just want to say again, start now for applying for benefits. I am not going to lie, the forms are fucking awful to fill out. However, if you wait for another 3-6 months. You maybe waiting up to a year to get an answer and get any benefits. Brilliant that you will get back payments, from when you first applied, but it won't help in between. Its even longer if you have to appeal.

The benefit system is meant to be for people like yourself. Its not a waste to use it. And don't underestimate the waiting time, like I say it could be up to a year. Hopefully, you might find you apply for it and not need it, in which case you can cancel it. Its far easier to cancel it, then find you need it and have to wait to see if you get it.

Thanks Kr1stina the thing is that for a lot of people, they are having to fight with every ounce of what they have when they are ill. It's just so wrong. I know writing to my MP is a total waste of time. I wrote to him once before over a totally unrelated issue and the reply was one of the most bizarre I have have seen (I deal with the public a lot in my work) It was a concise study in missing the point, obfuscation and circumlocution. As I have said before, I thought 'Yes Minister' was a comedy until recently and now I realise it's a bloody documentary!

Kri1stina, I regularly encourage patients to write to their MP about issues that I or other individual GPs have no power to change (and trust me when I say wehate working under current circumstances) and some (thankfully) do.
Recently, a patient showed me the reply he got sent: a lot of very good sounding waffle, all about how that particular MP's party was doing everything they could to save the NHS when others weren't , ending with "if you have any ongoing concerns, please speak to your GP about it". Aaaargh! I cannot change waiting times - it is beyond my gift!
NB This was about an ophthalmology appointment, 36 weeks to clinic appointment, 7 months to pre-op appointment, followed by 14 months (and counting...) waiting for the actual operation while his eye sight is getting worse.
It is utter crap.

Ha! X-post with you - so very true.

Do you have an actual diagnosis? Who was it that diagnosed you? Was it a specialist consultant?

Pacific No chance of me taking the morphine if I don't need it. I have never hurled up so much as with that stuff! It was DMums method of choice suicide wise too. She had bad MH all her adult life but she had intractable cancer and sorted it herself ultimately. She was brave but it was the only option open to her at the time. It was in the red tops and almost every detail of the report was wrong so fuck off Daily Fail Wankerj journos if you are thinking about lifting my life for your rag!

If the only physiotherapist you've seen was the useless one, I'd find the best you can get to and go privately, in parallel with everything else you're trying. Even if as seems likely your condition is too far on for anything they do to be curative, they can probably help you manage it, and the cost will be trivial compared to what you're considering.

PIP is very hard to get nowadays (you can thank the tories for that little nugget) so if apply do be prepared for a very long fight.

OP I wouldn't go through PALs. I'd go higher and contact NHS England personally OP.

NHS fails those who try and help themselves-everything I've ever needed I've had to pay for myself-before you pay out have a look at private healthcare-often you have to be in it for 6 months before you can ask them to operate but I pay into one that pretty much will give you an operation if the NHS can't do it in a timely manner or won't do as they wouldn't for me (too young and not diabetic) the private healthcare were amazing!

Hotpink I have to have the steroid injection the reaction to which is diagnostic before I can have the surgery. I have seen several chiros over the years as I have moved about with my job and they all said it's SIJ and...weirdly. On our way back from the appointment in Sept (to see B) of last year an idiot pulled out in front of us and DH braked, I shot forward in the passenger seat restrained by the seatbelt and I felt my leg continue forward and the joint open and close in the moment IYSWIM? It wasn't painful but to me - diagnostic if I didn't already know.

I am hoping for a call tomorrow with an appointment for later in the week for the injection privately. Decide on a pain score. Injection wait two weeks decide ew pain score and if the pain is gone the surgeon is happy it's SIJ.
It must be bloody demoralising being the surgeon constantly delivering news that makes people burst into tears on an hourly basis too.

Monkey precisely. I feel like my NI contributions have been taken fraudulently. The hope is always that the country gets more in than they have to pay out but I have used bugger all by comparison. I even stitched my own knee when my ex uprighted a stone cutter onto it. It's like a friendly smile of a morning when I'm sat on the loo!

You really think you would be much better off paying your NI contributions into a private scheme? Are you crazy? An American friend of mine showed me a receipt recently for a 6 day stint in a US hospital. It came to $55,000.

Having been through a similar journey for getting treatment once I synpathise with the difficulty you face. It's utterly frustrating and soul destroying. But that's down to medical opinion, admin errors and a lack of nhs funding. Also unexplained lower back pain is made worse by resting and keeping going as usual is recommended by NICE guidelines. You have been very specific with your diagnosis but I'm wondering is you've fallen into this area? Write to your MP for help and/or go back to your GP to explain how bad it is. PIP idea is good too.

What I would lose is the notion that we're better off with a private NHS. Best of luck.

Away thanks for that piece of information.
My main concern is if I fight to have it done on the NHS it will take ages and ages and the whole time I have no effective joint on the left, my right is taking a pounding so I am seduced by the thought of just paying up and getting it done privately just to bring some normality back to my life, getting back to work and earning (and paying tax and NI again) and taking away that worry. If I doggedly stick it out I will almost certainly need right side surgery, another loan, another ten grand lashed out as the system isn't going to improve any day soon. There seems to be little incentive for anyone to sort it out, big money go round that it is!

Bunkai I am sure you are right although America is expensive compared to parts of Europe. I have a friend in a European country and she pays TEO£35 a month and has had amazing treatment and quickly too.

If we all had to pay for healthcare there would be masses of competition, prices would come down, quality would go up and we would all be more responsible with our health and not get to 20 stone and get shitfaced and fall down steps if you know you will have to pay the 'top up' It's gone too far down the route of everyone seeing it as the free for all it has become.

So sorry you're in this awful position.

I've been there. I had a fall which took out my knee completely, major painkillers, the knee wouldn't straighten and work wouldn't have me in as too great a risk, and played the waiting lists game, which began with no scans, just a waiting list for physio. The NHS physio took me aside on the second session and said she could see it was a clear surgical case, physio could do nothing, however she had to by hospital rules, see me four more times before being allowed to refer me to the consultant's waiting list, and he would then have to move me to another different waiting list for an appointment to consider surgery. The process would be four to six months. She advised me with an addendum that she wasn't supposed to say it and would deny it if I repeated it, that I needed to find some way to go private if I possibly could, as by the time I came up on an NHS surgical list it was likely I'd be permanently disabled and it would be unrepairable.

I managed to find the money to have the MRI that showed the fragments of bone everywhere and the damage to the head of my femur and the two surgeries needed to repair it privately and she was right. It does feel like a betrayal, not least that the physios were trying to straighten a joint blocked with bone fragments that was never going to straighten, and denied scans as not yet at that stage of the pathway, they and I caused additional damage. I can walk unaided but have never fully recovered.