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?

So who actually diagnosed the condition op?
Sorry I have read all but I don't see who or when it was diagnosed - I'm not doubting you btw but interested

I'm with the NHS chronic pain team now having exhausted my medical insurance for sacro iliac dysfunction, but it was diagnosed with a scan and the position of the pain

And I'm sorry but I disgree with shakeys advice. The NHS do not pay for people to go private because waiting times are long. Even if you threaten to litigate.

I'm not a solicitor or a doctor but I see nothing in the Op that indicates negligence. I see an over stretched system , hardworking staff trying to do their best and a public that wants a better service but isn't willing to pay for it.

The OP needs to concentrate on getting her problems sorted, not on a vague hope that she might recover the cost 10 years down the line.

I am no medical profession but have SI and facet joint issues and have plenty of experience in the NHS journeys...

Am I right in thinking that at this moment you have no formal diagnosis provided by the NHS as your previous MRI and X rays were clear? It seems to me from your OP as though the consultant is waiting for the results of your diagnostic injection before giving a formal diagnosis and then possibly proceeding to surgery - have I read that right? If so, it seems to me that your issue is with the length of time it has taken to get here - sadly this is very common especially with chronic pain not from an injury as there are so many possible causes for back pain and the pathways are set out for GPs to follow. You could certainly contact PALS to complain however I think your energy (I know it will be limited) would be better spent at the moment thinking forward rather than back.

Is there any chance your employers would pay for the diagnostic injection privately to speed things up? I have found that although there can be problems having private and NHS care simultaneously in that it's not really on to "cherry pick" and pay for only certain things, a lot of the people you see actually work dual roles and will accept a private diagnosis for NHS treatment. If you could have the diagnostic injection and then have a clear plan of action you would have hope, at least. My employers weighed up the cost of injection versus their cost to income from my absence and decided it was good business sense! If not, and you can afford it, I would pay myself providing you are clear the NHS will accept the results and treat accordingly.

In the meantime, I second the PP mention of pain clinics, these really can do huge amounts of things, not just meds but other stuff, and the relief of being "taken seriously" and worked with, is enormous.

Sadly back issues like this are a fucking nightmare to deal with, I have gradually adjusted my thinking to getting stuff sorted in weeks, to months, then years and eventually accepted it is lifelong (but I have a different condition diagnosed now which is a bit outing!) it's very difficult at the time, a bit like the process of buying a house, it seems interminable and traumatic at the time but fades when you have been living in your new house for years! If that makes sense

There are no doubt huge problems within the NHS at the moment and sadly this thread shows that the Tories ideology of dismantling the NHS, by gradually fucking it up so badly that people come to look at private health care as an investment, is working extremely well for them

I hope you get some answers soon and there is treatment available.

it's unacceptable but sadly not surprising.
the nhs can be truly shit.

my dc has a rare bone condition which took 9 months to diagnose, and that only because we went privately halfway through when the nhs referral for the investigation was 6 months away. for a child in constant pain-no pain relief offered and one of the possibilities explored was cancer.

cost us 10k for diagnosis, pain relief and physio.

imo the nhs should be liable for costs of loss of earnings, household help at home etc due to waiting times.

"I'm not a solicitor or a doctor but I see nothing in the Op that indicates negligence. I see an over stretched system , hardworking staff trying to do their best and a public that wants a better service but isn't willing to pay for it.

The OP needs to concentrate on getting her problems sorted, not on a vague hope that she might recover the cost 10 years down the line."

Expressed much more succinctly and intelligently than my post this is what I was trying to say!

I'm not a solicitor or a doctor but I see nothing in the Op that indicates negligence.

not making a timely diagnosis and leaving patients disabled and in pain is negligent in my opinion.

Hi I would look into making a formal complaint with PALS and perhaps even get legal advice.

The fairy and others - this is moving really fast sorry!
The fairy OMG

Mindfulness/adult colouring books Shize how do they not get punched?

Is it not negligent that due to a crap referral letter and subsequently, a ridiculous waiting time has contributed to Arse's condition deteriorating?

I know the main thing is that Arse's condition is treated asap but it's through some level of incompetence that it's arrived at the point of her paying herself out of necessity not choice.

Wondering if it would be any use to you to see a women's health physio as they tend to see these kind of problems pelvic pain associated with pregnancy and pelvic girdle disorder. The chartered society of physiotherapists has a acpwh (physiotherapists in women's health) I would get in there and find out the means of physio that is highly specialised in pelvic girdle dysfunction and see if you can get to them. Be aware that in this field the most experiences and expert actually work on the NHS as opposed to privately. But I think in terms of intern managemtn it might be worth exploring for you

Oooh, good idea re women's health physio!

the thing My GP not making the effort to send me to the right guy. A not bothering to even find out the name of the right guy just referring to him as the nice Indian gentleman that repairs SI Joints. The ortho dept not reading the referral letter properly and/or not being aware that the SI joint is in the pelvis and thus sending me to see a pelvic guy NOT spinal? The RE-SETTING OF THE CLOCK AFTER A 36week WAIT. All of this is not negligence? Surely some or all of it is?

Getting told I have to wait a further three months just for the diagnostic injection is a s a result of the system being poor but the rest ??? Nah!
This is why I said. if the people involved had done the basic groundwork correctly I would have been months ahead of where I am now - months and it may not have separated completely maybe?

Redbug It's a crock isn't it?

Thanks for everyone responding. I am really grateful for all the imput. As I said at the beginning I asked for this to be pulled so it may go Poom! I will re-read it all. It's moving fast.

I'm in completely agreement. I've had my eyes opened to something similar, not me personally, but a friend, so I'm not surprised by your post. It worrys me very much.

I'm sorry you're having to endure this. It's bloody horrendous.

Whilst I understand there are exceptions, the NHS have never failed me and my family. Maybe it's the part of the country I am in who knows. I fine it very difficult to read NHS slating threads when in reality we'd be in a very different world if we didn't have it.

I have no advice other than to say the chances are the surgeon who operates privately probably is also an NHS surgeon so if you're claiming incompetence, private means quick and nicer but not necessarily better.

Good luck OP. I'd probably pay for quicker if your life is that badly affected. It's the price of a car loan.

That's awful.

Here in Ireland, this EU scheme is really pushed if the health authority can't treat you in a timely fashion. Presumably while you're still a member state it's open to you:

europa.eu/youreurope/citizens/health/planned-healthcare/expenses-reimbursements/index_en.htm

You will have to pay up front but can claim the cost back. The Spanish and the Germans do excellent healthcare.

Women's health physios can be amazing, I've seen them in the past, their treatment focuses very much on the pilates support the core methodology which is the best approach for pelvic girdle issues

I think ultimately we get the NHS we pay for. The U.K. pays far less per capita than France or Germany for example - where everyone pays state health insurance (or private health insurance).

Technically, aren't we all doing the same through our NI contributions?

I'm not a solicitor or a doctor but I see nothing in the Op that indicates negligence.

not making a timely diagnosis and leaving patients disabled and in pain is negligent in my opinion.

Ah. If only all negligence claims were as simple as garnering the information from a Mumsnet post and making a complex legal decision on that basis.

Precisely Red.

worries not worrys

But this seems to be the NHS that the public want sad . Until they have to use it of course.

Except it's not what most of the public or the NHS workers themselves want. They're understaffed and overstretched with limited finances of course. With an ever growing ageing population. Again, not a bad thing.

But the reason I said it isn't infallible is because I watched a bedridden old lady on oxygen get sent home at 9pm at night because they needed the bed. I'll never get her cries of pain out of my head. They did it in a rushed manner because she didn't live too far from the hospital and was ushered into a waiting ambulance to transfer her back home asap as her carers were expected to arrive at her home at 9:10pm. That could have been my 80yo grandma they were trying to move and that's not the sort of NHS neither the public or myself want.

I need a certain type of medication so that I can live. The NHS offers a version that will keep me alive but send me on an immediate downward spiral and leach all my energy away. Life, but no quality of life. I literally end up on my hands and knees with exhaustion. So I buy my own medication from Mexico. My GP knows I order it online, and doesn't care.

And my neck is fucked. My GP would not give me a referral to the NHS physios in our town because he says they are rubbish and hurt more than they help (!) So he gives me business cards for chiropractors/osteopaths, some of whom are his friends. And I can't have a scan because I'm not in agony 24 hours a day.

And my son needs counselling. He is sometimes suicidal. Lovely GP says one to one counselling doesn't really exist in our county anymore. He can have telephone counselling or group counselling. DS has autism and groups and telephones are not things he can deal with. OR I can organize and pay for it myself.

So yes, to me the NHS may as well not exist right now. I am considering taking out private healthcare. One plus point about my GP is that he doesn't bother to record my ailments either, so according to my NHS record, I am a very healthy individual!

QOD I have not been formally diagnosed yet. That is three weeks away but over the years several Chiros have said Sacroiliac to a man. It's inflamed where my SIJ is and I had the leg continuing to move forward when the rest of me stayed in the seat during a near shunt. If it's not SIJ I will eat my dog!

I feel for you op, although not as bad as you, ive suffered with this for 15 years. Gave up on going to the gp about 7 years ago, relying on the chiro and a private dr in spain for corticosteroid injections

I have tried to make some useful suggestions - it is important to have interim solutions .
I really dispair about people advising legal action - the NHS pays out billions to lawyers and claimants - some of these are well deserved but many are not and the medical negligence lawyers make the most money.
Where do you think this money is coming from ?