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

(164 Posts)
ArseHasFallenApart Sun 26-Feb-17 05:33:37

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?

LoveMyLittleSuperhero Sun 26-Feb-17 05:57:30

Have you tried speaking to PALS and explaining all this? Maybe they could get someone to move a bit quicker? If nothing else definitely make a complaint to them.
I'm sorry I have no real advice, I'm sure someone will be along soon with some, but I didn't want to read and run.
flowers for you, I'm so sorry, it's shit and I don't think it should be a case of you paying and you definitely shouldn't have to suck it up, but I don't know what the solution is. I honestly hope it's found quickly and you are on the mend soon.

Champagneformyrealfriends Sun 26-Feb-17 06:00:29

Oh god how awful. I have no advice but I'm giving you a "bump" up the board. Would a local mp be any help?

Areyoufree Sun 26-Feb-17 06:02:44

Oh god, that sounds soul destroying! My ex was in constant pain and on a waiting list for an operation for years. They kept scheduling the surgery, then there was a constant stream of errors (one time he went in for his preop appointment, and they had to send him home because they had the wrong body part in his notes!). It was an awful time - he kept getting his hopes up that the pain would be dealt with, and then be let down. Anyway, eventually he got funding for the operation from a local trust that funds certain operations for people who have been waiting for a long time - not sure if anything like that exists in your area? Might be worth looking into.

ArseHasFallenApart Sun 26-Feb-17 06:06:34

Hi Love Champagne and Areyou thanks for the replies.

I am under pressure to remove this so have asked MN to do this as it's too identifying apparently. I feel so desperate and I can't believe this is Britain in the 21st Century. If I allowed a dog to suffer like this I would get prosecuted and rightly so!

picklemepopcorn Sun 26-Feb-17 06:12:53

Under pressure from who? What an awful situation.

ArseHasFallenApart Sun 26-Feb-17 06:18:02

Pickle Family member. Says I spill way TMI sad

I have been awake almost all night. I can't get comfortable and when I do drop off the clicking and clunking wakes me when I move. I am just sooo pissed off with not being able to do anything. I have learned to crochet though!

blueistheonlycolourwefeel Sun 26-Feb-17 06:34:59

Have you considered applying for PIP? I know I'm missing the point of the thread, but it might help financially a bit.

trinity0097 Sun 26-Feb-17 06:40:06

My situation was not nearly as bad as yours but I paid £6000 yesterday for my gallbladder to be removed privately as the NHS were too slow and like you passed from pillar to post, conflicting advice, constant pain, frequent admissions, but surgery too far off for me to want to wait any longer.

I already feel much better, I have pain from the trapped gas as it was keyhole surgery and they blow you up like a balloon with CO2, but am very grateful to the family members who are stepping in to pay off my credit card!!

ArseHasFallenApart Sun 26-Feb-17 06:40:20

Hi Blue had to Google it. Oh God I have never had any sort of state aid in my life, it fees alien. I am only 54 and am really fit and healthy normally I can;t adjust to this life! I am going doolally at the thought of it all.

Oliversmumsarmy Sun 26-Feb-17 06:42:27

Unfortunately op the NHS would rather spend £1000s in order to save a fiver.

I went through 5 years of constant agony with hip pain. I was "seen" by a consultant every 3 months ("seen" meaning we were in the same room and holding a conversation but he at no time did he look at me) I had physio therapy every week. They told me that I wasn't doing my exercises (even though I was) so I wasn't going to get any better. They wouldn't even x ray me let alone send me for an mri. Everything was you probably have, you might have's... Nothing was certain.

In the end I paid privately. Within 5 minutes of the osteopath taking some notes and actually listening to me she said "hip pain is usually referred pain from the back" Se took one look at my back and noticed immediately that I had bones sticking out of my spine. I had been hobbling around for the past 5 years with 2 sipped discs.

It cost me about £2000 to diagnose and fix yet the NHS must have wasted thousands in useless appointments all for trying to save the cost of an x ray and mri.

Oh and fwiw apparently I had/have arthritis. When ever I have objected to that diagnosis I am told the x rays show it not slipped discs.

Try telling them that the x ray on file is not me and you are just not believed.

ArseHasFallenApart Sun 26-Feb-17 06:45:17

Hi Trinity Yes I am resigned to lashing out the dosh and paying it back on the drip. MY DH was diagnosed with Renal Cell Cancer in 2014. It was a fluke that we realised it was there as we had no idea. Had the fluke not happened he would likely not be here now. He had to wait eight weeks between diagnosis and removal so I should have copped on back then that this was not going to get dealt with in short order. I had three months off to look after him as he could do almost nothing for himself. I worry that in that time it has spread though and would like to keep some saving back if they want to delay removing the 'anomaly' from his chest. With me, we know what it is and it isn't cancer. With him we don't know but it could be. I would consider his op money better spent.

picklemepopcorn Sun 26-Feb-17 06:46:29

It's ridiculous. Sorry.

sobeyondthehills Sun 26-Feb-17 06:53:50

HI Op

When you can, get to the CAB and apply for PIP (personal independece payment) which is disability and also look into ESA (employment and support allowance) other thing you can look at depending on whether you rent or mortgage is housing benefit, you can only get this if you rent.

Both PIP and ESA could take a while to come through, so if the worse was to happen and you lost your job, you would be in the system.

I have no knowledge to your condition or the NHS which I have given up on

ArseHasFallenApart Sun 26-Feb-17 06:54:17

Oliversmum this is the thing! I now believe that the problems in the NHS are not so much to do with overwhelming demand but just incompetance half the time by the staff. Sorry for all you MNetters that work in the NHS but almost everyone I have come up against in dealing with this has been questionable their job.
If I was a physio and a patient seemed to know more about something than I did, I would zip it and Google that evening and maybe ask for some CPD on that subject. I would want to know more than my patient! I was able to tell her that the implants are not rigid, they are triangular and are inserted guided by flouroscopy. She looked at me like I was a crazy person! When she suggested it may be all in my head I told her that she had felt the heat coming off it herself. She said heat can be created in psychosomatic illness. Anyone that knows me knows the last thing I want is to deal with people in white coats.I had too much of that in 2014. I do not have Munchausens syndrome FFS!

ArseHasFallenApart Sun 26-Feb-17 06:54:52

*questionable at their job

Mummyoflittledragon Sun 26-Feb-17 06:56:47

Your situation sounds horrendous. Personally have spent around 30k on my health because my condition is 'untreatable'. I have ME and chronic pain. I have two body treatments a week. My pelvis moved and comes out occasionally and my spine curves incorrectly and is being treated. My jaw is still not perfectly aligned but is more manageable and my back hurts less these days. I have full body pain. The NHS physio was shit, gave me exercises and I also signed myself off. I see other people as well privately for my health.

My advice would be. Find the money. Suffer as little as possible. It's not fair. I see many many people getting treated and many medical conditions and illnesses regarded as far more important than others. With the NHS, if it isn't acute (like the example you gave of neighbour) or life threatening (like your dh), you can piss off. You need to use your energy on your health, not on the unfairness of the situation. Do whatever it takes.

ArseHasFallenApart Sun 26-Feb-17 06:57:41

Sobeyond So many people have given up on it. Surely it needs a legal challenge as it's not doing what we have paid for it to do. If I could have paid my NI contributions to a private scheme I would be much better off.

ArseHasFallenApart Sun 26-Feb-17 07:01:21

Mummy you are dead right. I will pay and get well and get back to work. Nosey Gridestode.

I can see why people go down the legal route to be honest. It goes right against the grain though doesn't it? Perhaps the managers think, "Ah well, leave it as it is. We'll pay out for the ones that sue us. It's still cheaper to do that that run it properly".

ArseHasFallenApart Sun 26-Feb-17 07:02:21

Than run it properly

Itisnoteasybeingdifferent Sun 26-Feb-17 07:33:39

OP,
You are sadly all too correct. We have not got a health service. We have a monstrosity of ego's and bureaucracy.

My condition (sarcoidosis) gets verry little funding. People who eat themselves into poor health and serious illness get treated.

sobeyondthehills Sun 26-Feb-17 07:41:21

There is very little funding all over the place.

I have mental health problems and have given up on getting anything other than just pills in my area.

I think arse a lot of people think like you now

HalfInLoveWithElizabeth Sun 26-Feb-17 07:49:19

If you are in England there is an NHS Complaints Advocacy service in your area which is there to support you to make a complaint, but in the process may well help you resolve some of your ongoing issues, you should be able to find it by googling. It is free and open to anyone with a complaint.

ArseHasFallenApart Sun 26-Feb-17 08:03:00

Don't get me started on MH care ! My DMum (RIP) was a user of the pretty poor provision back in the 50's to her suicide in the 90's. At least there was provision though. She spent time in a MH hospital that covered literally acres. It's gone now but the need is greater than ever I estimate so MH sufferers cannot be getting the care they need and that is hidden. At least my illness is obvious on an Xray for want of a better way of putting it. What did they used to call it? Care in the community? What bellend thought that one up? It's like something out of 'YesMinister' Mum wouldn't have lasted as long as she did without that hospital though.

bevelino Sun 26-Feb-17 08:07:53

OP I am sorry that you are in so much pain. The Vale private hospital in Cardiff perform the surgery you describe and can offer interest free payment options. Alternatively Are you able to request a referral to Stanmore orthopaedic hospital.

It can be difficult mixing private and NHS treatment and if you start having your condition treated privately, it may be difficult to receive treatment for the same condition under the NHS unless there is an emergency. I hope this helps.

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