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?

Another vote for trying PALS. Also have you asked the consultant's secretary to put you on the cancellation list and made it clear you will attend at very short notice? I've often got things done quicker this way but it does mean you can end up having to drop everything and rush out the door to the hospital but at least it gets it dealt with

I'm so sorry you're going through this. I have minor SI issues, nothing on your scale, but I can sympathise. Your condition is real and you've been treated so badly.

Please, please get in touch with CAB about PIP and ESA. The application process can be horrendous but CAB will pretty much tell you how to write it.

I agree with you. The NHS is very good at dealing with emergencies, but regularly fails people with chronic health conditions.

I have become as cynical as hell since Friday I'm afraid. If there was some way of paying privately and having the NHS pay you back (providing you have paid into the system of course) even on the drip it would be better than this sort of, "Thanks for paying all these years, we know you are in agony now do fuck off and stop moaning, there's a love' attitude.

Wit done that. Even when the nice chap at the ortho dept realised they had make a horsecollar of it by re-setting the clock he still couldn't offer anything for the six weeks. I told him I effectively had a broken pelvis/ apotted history etc. I could attend day or night, I had a bag packed etc. Nothing doing.

Get the diagnostic test done privately - is the diagnosis clear? ( you may need an MRI to rule out facet joint/ disc problem) .
Once the diagnosis is clear have repeat injections at the pain clinic on the NHS then you will be able to wait for your NHS op.( ask your GP to refer you urgently to the pain clinic now- noting your use of morphine and frequent A and E trips plus impact on life/ work)
Keep in touch with your NHS orthodox consultant sec ( nicely) to make sure you are still on the list and ask to be considered for any cancellation slot.
Good luck.

*ortho not orthodox!! ( autocorrect )

Precisely monkey. I agree with you, and I say that as a frequent flier.

I'm currently sat on the sofa rather poorly just doing my utmost not to end up in hospital again. If I had the funds I'd pay privately in a heartbeat.

I'm more than aware of the budget cuts but having been an inpatient a number of times, this isn't always the case. The NHS is invaluable yes, but it's not infallible and they do let some people down.

Molly agree. Urgencies are dealt with well and cancer is covered to a degree although we discovered my DHs cancer because he lifted something really heavy and the tumour ruptured otherwise we would not have known it was there. He had lost a bit of weight but the Christmas chocolate had run out so we put it down to that. Even then he was sent home to wait eight weeks for the kidney and tumour to be removed. He was on four lots of painkillers, stomach protectants etc and I had to nurse him as she was in a lot of pain. It had time to spread of course and we are concerned that this is what this 'anomaly' in his chest is? So even with a diagnosis like that, there was no availabilty to have it removed ASAP which was a nightmare. Privately done it was 18k but it would have been the same surgeon and he said it would have only brought it forward two weeks so we stuck with plan A. I can't fault him he has been stellar but he is working with massive constraints.
One of the reason I am keen to get mended is I may need to care for him again later this year as we want this thing out of his chest and he is helping me with a lot of my personal care currently andd we may have to change roles. The nephrectomy was supposed to be straightforward but there were complications so I dare not assume he will have an uneventful time of it and hang on for NHS. We have no other family near to help as they have all buggered off at the first sign of trouble :(

Pacific I understand that GPS have no power to change waiting times. Nor does anyone else who works in the NHS. The only people who can improve them are the general public at the ballot box. If people keep on voting for parties who want to cut back on public spending, this is the result. NHS staff can only spend the money allocated to them by the government.

The problem here seems to be the long waiting times for a new Out patient appointment, which means that the OP has waited too long to see the wrong people. So when she finally sees the right person, she is upset and angry and her condition has deteriorated .

It seems to me that all that the MP and the GP can do is ensure that the correct clinical priority has been assigned to the patient. It seems that she's on the routine list , whereas a proper assessment or update may indicate that her priority has changed . I don't know and neither does she because it's a clinical judgement.

It also seems to me that the GP may have made an error in referring her to consultant A when he clearly wasn't the right person. I quick phone call or email to enquire would have saved months of waiting for the OP.

I also think the GP might be able to check if another orthopaedic surgeon ( who can do this procedure ) elsewhere has a shorter list. The OP seems to have little to lose as she's not even on the list for surgery yet.

There's also the option of a referral to a specialist hospital . I have no idea if this is appropriate but surely it's worth a discussion with the GP?

Bet you are glad you don't work in England .

User that is good advice. Excellent in fact. As it is completely separated now though I reckon it has gone too far for just the injections maybe but I will explore that option with the consultant once I have had the diagnostic injection this coming week.

The NHS is good for the population but bad for the individual. It is very good at public health, common conditions and acute illnesses and injuries. Rare expensive conditions it never has been good at and never will be. It is set up for mass care. Complaints will hurry it into an early grave, which would be a horrible shame, and in this case just won't improve the service or do any good beyond inconveniencing people and taking up the time of clinicians in going through notes. It's a sad state of affairs but people should be reasonable. The NHS is not for US style care or individualised service. It's so that everyone can have a basic level of equal service

Urgencies are dealt with well

Depends which hospital. I was an urgency last year. When even the paramedics were telling the hospital they were concerned (rushed in with breathing problems - asthma & chest infection).

The doc discharged me whilst ON a nebuliser. I ended up being rushed back in even poorlier.

KrIstina I live in England but referred to Wales.

I am now on the list for surgery. As of Friday. It's a 52 week wait after I have waited 62 weeks.

Sorry, I thought you weren't on the list for surgery, just for the diagnostic test.

Bet you are glad you don't work in England

Yes, I am, I won't lie. But we are catching up....

The problem is multifactorial and because of that there is no one silver bullet of a solution.
In my area 'named' referrals no longer exists - so, if I refer somebody with a knee problem it is simply and ortho referral and the vetting process at the hospital end ought to ensure they end up being seen by somebody who is good with knees. But due to waiting time targets, that is not always the case. A non-clinical person aka manager/adminstrator will slot them in to a clinic, any clinic, to not breach waiting times, so that's that box ticked then

We regularly get letters saying "I saw X at my clinic today and will refer him to colleague Y to appropriately address his problem".
Yy to whoever said upthread the NHS will spend thousands to save a fiver.

Targets are a nonsense if the resources are not available to realistically meet those targets - it just leads to gaming which is rife

Arse I've had both SI joints fused, not with i-fuse, but with minimally invasive surgery. Mine were done by a pelvic and spinal surgeon at a specialist unit, around 7 years ago. I had to have the injections to make sure that it was the SI joints causing the pain beforehand but I didn't have to wait ages for the operations.

I'm currently waiting for the front of my pelvis to be re-fused (my problems are due to pregnancy 20 years ago). I was put on the waiting list in October. I'm in absolute agony and can feel my pelvis move every time I do. At the beginning of February they said the operation will be "in about 6 weeks, so the middle of March". I still haven't had a date.

I saw my GP on Friday and told him. He said "nevermind. Have you tried mindfulness colouring books?" I walked out in tears. I'm intolerant to opiates. I'm on limited pain relief yet no one seems to listen and no one seems to care.

I really wish we'd taken out private health insurance before I'd got ill.

Please do apply for PIP. I get it. And please complain about how you've been treated, it's really not fair.

OP I'm so sorry you're going through this. I don't have any useful advice but your frustration and upset is so clear in your post, I couldn't read and run

As you know, the problem is with the way waiting times are calculated. It's only when you get on THAT list, not how long you've been treated elsewhere. Because almost everyone has had treatment of some kind for a condition before they get to hospital , unless it's an emergency.

So that's why I think it's worth a try to get your priority changed, if appropriate . Or get on a shorter list elsewhere.

You can't make the list shorter.

The NHS is good for the population but bad for the individual.

Yep.

Arse, you will probably given me a hollow laugh, but have you tried pelvic supports? Surgical appliance departments can supply with a kind of brace to hold things together IYKWIM. It did help me for a while and up to a point, but if you've not tried, consider it?

PALS and Twitter to the hospital account. I've seen it done before to good effect. I very mich hope you get sorted soonest lass.

I have to say I hadn't thought of the fact that maybe the GP could have sent me straight to the appropriate surgeon after a Google. I Googled him when I came back from the consult with A and there he was in two minutes so when I got faced with B instead in Sept it was a bit of a shock. It's a nause up from start to finish innit?

Arse Here's what I'd do-

Pay for the injection and operation.
Collate all the info you can. Do you have a copy of the incorrect referral letter?
Put together a "case" with timeline of events.
Send it to the highest person you can source (agree PALS is great for "low level" complaints but yours goes much higher)
Word it as if you are sending it as a matter of courtesy before commencing legal action. State you will be seeking financial recompense to the tune of at least £6600 and you will let lawyers calculate an amount for pain and suffering+expenses. And await response.

I'm sorry you're suffering unjustly. It's scandalous.

For unrelated medical issues, my referral wasn't done. Just.Wasn't.Done. Had I not rang (like you) to see where I was on the list I'd have waited for many more months. As it was, when the initial letter came through following the (eventual) referral, it was to tell me the average waiting time was 20weeks. No, no, no. I rang the "Concerns Team" explained events and miraculously, I had an appointment the following week. Still a long way off being fixed but that's another story.

FairyCaravan

I'm really sorry to hear of your experience OP, it sounds excruciating.

I would apply for ESA as well as PIP as you're signed off work - the latter you are very unlikely to get. Checkout www.benefitsandwork.co.uk they have excellent guides to fill in the forms, and also contact CAB as they can help you fill it in.

As for the NHS what you have experienced is quite common for a non-life threatening condition.

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).

pacific I agree it's crap. But this seems to be the NHS that the public want . Until they have to use it of course.

Pants about no named referrals. So if you have a patient with a hand problem, they need to be seen by which ever orthopod they are allocated to first rather than seeing the hand surgeon ? I wonder who thought up that stupidity. Clearly someone who hasn't grasped that the hand guy will do a better job on hands because , guess what, she/ he does more hands. Doh.

I can only hope each department has a very robust system for allocating referrals appropriately . It puts a lot of onus on the GP. Which is fine for your knee example as it's simpler but what about more complex things like the Ops case, backs are so tricky.

Sigh