Am I right to be angry?

[YoungAndPainful]

Hi,

I have a really long story that I need to try and shorten without leaving out details.... I need someone to tell me if I am right to be angry.

At the age of 21 my life went down hill so fast! Before it all went to pot, I was so active. I took a year out of Uni to get some real world experience in working. In that year I had two jobs. One in a small Cafe, then the other in a Wetherspoons. I would walk far to get to work then spend hours on my feet and then walk home. I did not have to walk home but I enjoyed it so much. I started to feel pain in my joints, more so my hips. One day I went paintballing and suddenly I could not walk while standing straight or without any pain. I got an xray which showed that I had bilaterial hip dysplasia and Arthiritis in both hips. From there, I tried so many different prosedures to put off getting hipreplacements but they did not work. Eventually they decided to replace my hips. We have a super long family history of arthirits from young ages. Mainly, a lot of close family members had to get both hip replaced before the age of 25. My doctor asked me if I wanted them down in one go but I was put off by my family so we agreed to do the right and then after recovery, do the left.

I was on the waiting list for so long! Before I was put on the list, they removed up to 70% of the cartilage out of the hip as when they went in to fix it, it was torn to shreds. So, I was walking around with 30% of the cartallige for ages on the waiting list. Eventually a cancelation came up with a different specalist (my original was a specialist in young people hip replacements) and I was desprate so I took it. What I would do to go back and decline.

Any way, I had the hip replacement. In the hospital they LOST my pain meds that they told me to come in with (tramadol). So when I came out of the op, I was in so much pain but all they would give me was paracetamol until someone had the time to look into my prescription's. I was writhing in pain. Eventually the nurse who took my meds in the morning found them.

During my post op, I asked about the second hip replacement. The doctor treated my like utter crap. Like I was asking for something that was never offered to me before. He was adamant that I was to try all the other procedures I had on the right hip. I was so upset after that appointment as I had already gone through the hoops and was told that I would just get the second hip done as soon as I recover. The only compromise we came to was that my back and my hip would be scanned via MRI before we approach the subject again. I was fine with this. He wanted to look at my spine because I has ALWAYS suffered with lower back pain, more specifically, of a morning. That was getting worse swiftly.

I get the MRI. I got back to discus the results. He says to me to try the procedures before the hip replacement. I was sick of being in agony. I was sick of my life being on hold. I spent years working my ass off to become a teacher and was pushing back getting a full time teaching post because it was impossible for me physically. I said all this too him but he brushed it off. I sobbed and sobbed to him (he never looked at me once) and eventually he said if I agree to get it done in 2 weeks time then he would do it. NOTHING was mentioned about my spine. I didnt ask becasue I was already crying and in distress and wanted to get out of there so thought it was fine as he did not mention it.

I went in the second hip replacement. I asked to not get the epidural as I did not feel that it had significant pain relief after and explained what happened last time. The guy promised me that they would have IV morphine ready for me and he will authorise this himself. At this point, I was on the liquid morphine since my first hip replacements. I agreed on the epidural under the conditions that he promised. I came out of the op and they had my liquid morphine, except it was at a much lower dose then what I had been taking. As you can imagine, I was in so much pain. But they would not listen to me. I had also told them that I needed the toilet but they kept bringing me a bed pan. I explained to them that I can not go in a bed pan, I have tried many times but I just cant seem to do it. So I left it and never asked again. I had 3 bags of fluids. It got to 1am and I was in so much pain from the hip and so much pain from my bladder being full. I cried to them that I really needed to go the toilet but they, again, told me I had to go in a bed pan. They brought one to me and I told them my body/mind wont let me go in a bed pan. Eventually they scanned my bladder and as the woman said to me, my bladder was ready to burst. The nurse tried to put in a cathiter but failed a number of times. I was begging them to do something. She ended up having to call up to a different departmenet to get someone down to do it. Thankfully this nurse was amazing and put it in first go. I filled up a whole bag.

The next day I asked them about my pain meds and they would not give me any more. Eventually they saw that my heart rate was through the roof and that my temp was high. This worried them so they suspected a blood clot in my lungs. I was sent for a xray of my chest. My lungs were clear. They had to call in two on call docs to take a look at me to see what was wrong. The doctor looked at me straight away and new that it was because I was in extreme amount of pain. She stated that my prescription from the GP of how much morphine I was on was wrong. But I did tell them to look at how much liquid I pick up each week and told them the promise that the doc had made when telling me to get the epidural. She gave me some morphine through an IV. My heart rate shot down and my temp also followed.

I swore I was NEVER going back to that hospital ever again. The consultant who did the op made me feel uneasy when he came to see me and said that I had "twisted his arm" to do the op. It just made me feel like he couldn't be bothered and was annoyed that i "made" him do it. I just never wanted to see him again. I had so much anxiety to do with hospitals that I never went to my post ops. I did my own physio at home.

Couple of years down the line I am having issues with the hip, my back and other joints. I get diagnosed with Fibro. My shoulder starts giving me pain and locks. It gets xray'd and my doctor rings me to tell me that there isn't a change in the shoulder since it last flagged during my chest xray during my hip replacements, the shoulder is dysplastic. Hang on? I was never ever told this information by anyone. This was 5 years down the line. This upset me a lot! If I hadn't had begged by doctor to xray my shoulder (He said it was just fibro pain) then I would still be none the wiser as to having a dysplastic shoulder. I would think that if a red flag came up on an xray, then I should have been informed?

I moved all my care to a different hospital. They gave me a CT scan to check my hip as I was struggling with pain and limited mobility. It showed that I had arthritis in the sacroiliac joint and that I had arthritis in my lower lumbar spine. Obviously I was upset by this news. Every hospital appointment comes with bad news.

I recently had steriod injections in my Sacroiliac joint to see if it helps but it did not. After a discussion with my specialist, he requested an MRI on my spine just to see if that's what was causing the pain. Personally, I know its both things but I will let him do his job.

However, I just received the appointment summery letter were he states:

"I note her last MRI scan was in 2018 which showed some degenerative changes..."

So, that MRI that my hip specilist ordered before the second hip replacement actually flagged up issues with my spine but again, they did not inform me of this. The ONLY reason I found out about my spine was becasue a CT was ordered on my hips a year ago which caught my lumbar spine. Like I would expect, that doctor INFORMED me of the issue with my spine even though the original scan goal was to look at my hips.

Am I over reacting? Am I expecting too much and being unreasonable? I honestly think that when an issue FLAGS on a scan, this should be communicated to me, no matter if its anything to do with the reason I was scanned in the first place.

I just feel like there has been so much negligence with that original hospital as they failed to inform me of two different scan showing up two different joint issues. They also failed on keeping promises when it came to pain relief.

Honestly, I needed to vent my story and I really will take any advice or criticisms from you. If I am wrong in being angry then I need to be told.

[kev60]

hi, sorry to hear you’re story. It’s good that you can vent on this forum and you have every right to be angry. I remember having an x-ray on my hips ( degenerative on right hip) but when I got home the hospital phoned me and asked me to go back as they had spotted something and wanted to check turned out I had an impacted bowel it just showed up on the edge of the original x-ray and then they gave me meds and sorted. I have often had scans and they have found other things. I think you need to formally complain you seem to have all the relevant information and your view of what happened, it sounds like you were treated badly by a few people and helped by some but put that in the complaint. If they’re having a bad day they should not use you to vent. Good luck I hope things get better soon. Kevin

[Wooodsie]

Hi, I'm sorry to hear your tales of woe, you have been, and are still going, through the mill.

It would seem that it isn't unusual for the medical profession not to inform you of everything they see and or know, I have no idea why they don't, I only assume they don't like being asked other questions about other complications. Whilst this might feel to us mere mortals like negligence, it would be hard to show in a court of law, as you can't show any detriment.

Can you get back to the original surgeon who treated younger patients? maybe even pay to see them for a private consultation, so hopefully they may put you back in their system. Even if you can't see that surgeon, you may benefit from seeing someone privately and they should be able to take the time to explain your medical history and condition.

Don't apologise about the rant, most of us would be the same.

[Fministry]

there’s no doubt that you have a genuine health problem with your joints. Having hip dysplasia and what appears to be a family susceptibility to those issues must be really difficult at such a young age.

However you cannot change that. All you can do is trust that your surgeons will be able to offer you treatments to alleviate some of your symptoms. You sound hyper anxious as well as angry. Is it possible that you may also be depressed? If so your Gp should be able to help. Regarding morphine what you need to understand is that there are limits to what doctors are permitted to prescribe. Full stop. They are not being cruel. They are trying to manage your pain without the very real risk of addiction. Overdose can lead to death.

Sometimes healthcare professionals fall down in their communication to patients and this may be worsened if they perceive the patient as being unreceptive. That’s not to say the professionals shouldn’t improve their communication. They should. Sometimes their communication is woeful.

Try to get help for your anxiety and try to listen well to the doctors and at the same time let them know of your concerns but without the heat of anger as that gets in the way of real communication. I hope your health problems stabilise.

[katieoxo60]

Hi there YoungAnd Painful, I have read your detailed post and the replies . It is a natural response to be angry , just be careful how you let the anger out. When in constant pain its difficult to see straight or trust people who are vague. That said you are the patient and entitled to be fully informed , which I believe you don't think is the case. Speaking from experience in many cases of hospital outcomes I have found Drs are too vague just as you have found. Do not be frightened to challenge a consultants opinion as given to you, they are human too . In cases like yours you will have many years of attendance at hospital so need a Dr who is fair and works with you. In respect of the tramadol being taken away they do that to me also , I was told they only like to give what the hospital thinks is best , however in respect of tramadol if you have been taking it for a long time (I have) it should not just be withdrawn . There are lots of stronger painkillers in use and there is scientific evidence I believe that tramadol is the least addictive. When any issue is flagged on a scan it should be reveiwed with the patient if the Dr feels the patient is able to understand , and should be conveyed by a medical person who can convey it in words that you understand, unfortunately many patients don't understand so many drs don't convey the information because of this . This is why Drs should be more knowing about their patients. A formal complaint would allow you to at least air your greivance, and maybe alter the consultants approach to you. Delays in treatment do not help where pain is concerned, you need a pain control regime and that takes time, as does recouperation from major ops . Hope this has given you something to consider, because what you have is life long (arthritis). For me I have had good & bad patient approach over the years so appreciate bad practice does occur on occassions but it does need to be addressed so the whole of your treatment is not seen as bad because of one persons poor approach to you. Best wishes , hope you feel better having let the anger out, and please keep us updated on your progress good or bad so we know what you are going through. My thoughts will be with you .

[piglette in reply to katieoxo60]

Although tramadol is considered to be less habit-forming than other prescription opioids, users can still develop an addiction to tramadol and do need to ween off if having taken them for a while as you say. There were a few programs on TV about the problems they have with Tramadol in Louisville with people taking Tramadol illegally. Quite interesting.

[Linlang]

so sorry to hear of your bad. Experiences..

It should not happen but the NHS now is not the service I worked in 40 yrs ago.

I think you have to be assertive and ask for a second opinion if you feel uneasy in any way. It is sad to see how few doctors go in to the profession tomake a difference….

My daughter an anaesthetist in Australia has continually said to me..they can give you more to control the pain. I recently had a total knee replacement and med control has been a problem. I have been assertive and now have better meds. I had the op privately and was uncomfortable and continually asked for a pillow. This request was ignored till end of day 2 . A different nurse asked me what she could do and immediately produced a pillow and said there is a cupboard full of pillows! Think some of these graduate nurses d

Forget that comfort of patient is also important

[piglette in reply to Linlang]

I had a hip replacement privately and the level of nursing was really bad compared to my first hip which I had done on the NHS. When I mentioned it to the head nurse she admitted that they were having temporary nurses from some employment bank who had come from outside UK and I got the impression they had had limited training.

[Linlang in reply to piglette]

Thk you for this. It’s pretty awful isn’t it! To give credit to my small hospital when I conveyed my feelings to manager action was taken

[piglette in reply to Linlang]

We have a small hospital but it is slowly disappearing, they have moved some parts miles away to a large hospital and they are slowly selling off the land for building lots of little boxes, very tall little boxes probably!

[Linlang in reply to piglette]

What a shame! Was told by one private hospital manager.some consultants don’t write a report!!

[Linlang in reply to Linlang]

Seems this lessening of private hospital service is kept under wraps where possible!

[piglette in reply to Linlang]

Probably because they can’t write!!