Contact PALS or send email to consultant's secretary?

[whichwaytohome]

I really don't know what to do. There are blatant lies on my medical record. I've already decided to discharge myself from the consultant, as I have no faith anymore.

I had a fusion last year. Originally he was going to do far more, but changed his mind two days before, as it would be too difficult to recover from. He then lied on the letter to my GP, saying that an injection he'd given me months before had worked, so therefore the lesser surgery would. This is untrue, the injection made no difference, this is why he decided to do more radical surgery, however changed it at last minute and lied on my notes.

Since the surgery I've been in constant pain. I haven't been able to get rid of crutches yet (which I didn't have before surgery).

I've not seen my consultant since, always registrars, who are lovely people, but always a different one, so nothing is joined up.

I saw the latest registrar last week. He looked, asked about pain (I'm fed up they never listen and never write anything down. This one was lovely, noted a lot of stiffness. I mentioned that my arch is considerably higher on that side since surgery, which adds to the pain. He went off, came back and said that they could remove metalwork to see if that happened, but try orthotic first. Fine...I went to leave, consultant came in. Looked at foot, told registrar that he would take metalwork out next month.

I've now had a letter from them to my GP. It says that after the fusion I was symptom free this is blatantly untrue! I have never been without pain since the fusion. Before the fusion I walked without an aid, ever since that has been impossible.

The malunion of my tibia (which is a different length to the other) and ankle arthritis have not been addressed, although he was going to do that last year. Additionally I also have pain in my tibia when I walk.

I've decided to not have the metalwork out. I don't want an operation that has not been discussed with me. I'm even more reluctant now they have lied twice to my GP. I just have no faith anymore.

Do I email PALs or just the consultant's secretary, copying in my GP?

I think this is definitely one for PALS. Why the fuck aren’t they taking notes? That’s so weird. You will have a record of the number of visits which wouldn’t have been necessary if he’s been so miraculous.

Btw, I have a “Miserable Malalignment”. Is this what you are talking about. Bloody horrible but accurate name.

@Fraaahnces I have no idea, I've only seen registrars since the operation.

Having read the letter again, they are saying that they are taking the metalwork out as the pain has suddenly occurred, which is blatantly untrue. The pain has never ceased.

Originally the consultant was going to do an osteotomy, as my tibia is bent and shortened. I also have ankle arthritis. He decided I couldn't cope with the surgery.

I don't want metalwork taken out under false reasons. It is the fact that I have been in constant pain since the operation and that hasn't been documented. The surgery is rushed, they want to do it the first week of January, I didn't realise they are only doing this as they think the pain is new. I'm fed up with lies on my medical records now.

@Fraaahnces I have no idea if that's the name. My leg was broken 35 years ago by my ex. It was a spiral fracture and was fixed by only a cast. It's only become noticeable in the last 6/7 years ago that the tibia never healed properly.

Contact PALS. Document everything in chronological order. All your conversations you've had in your consultations regarding your symptoms etc. Stay objective if you can. Good luck.

@ginoohginoginelli thank you, I will, I feel stupid as my first reaction to the letter was to cry (probably anger) and feel sick. Such an extreme reaction, but I feel powerless. They haven't listened once. I'm definitely not having the operation. I was hesitant anyway, as they never explained why they wanted to do it, but am certain now I know it's because they haven't listened.

Should I copy in my GP too? I want my GP to know I've been in constant pain, not that I've suddenly developed pain (which is what my records will now show).

PALS as above but do not suggest consultant has lied as that puts them immediately on the defensive. Instead state the chronology, that at your recent appointment it was apparent that your notes are missing history of pain etc since the first op, that there seems to be a conflict of opinion about next steps which you would like another opinion on before consenting to further invasive treatment.

Think this is a case for PALS.

But and I say this gently - this isn't necessarily a case of the consultant lying about your pain and recovery. The 'facts' given in the notes and letters may not be true, but it doesn't mean the medical staff have deliberately chosen to misrepresent your health condition. As you have said - they don't listen to what you are saying, and that's not good, so it's hardly surprising that when they come to dictate / write up your notes that they're lying - they're writing up what they think they've heard / understood. As I say, not good, but not lying.

Sorry if you think I'm labouring the point here, but it could guide you on how you approach our complaint.

First I would go to your GP and explain the situation - that you don't feel listening to, and that the hospital medics have misunderstood your problems and proposed treatment that you don't think will solve your problems. Get that information 'on record'. And be clear to the GP what you want to happen and how can they help you. You can ask for a referral to another consultant for example to get a second opinion.

Writing out a list of things you want to cover when you have a doctor's appointment is always a good idea. Take the list into the consulting room with you and get it out and work through what you want them to know, eg the pain and where you feel it, when you feel it and what makes it stop, type of pain (sharp, dull, burning, tingling), still using the crutches etc.

If you do decide to contact PALS, I suggest pitching the complaint in terms of they haven't understood your problems and concerns and therefore your notes are not accurate and the treatment won't solve your problem.

I hope this helps and you can get some good solutions to your back and leg pain.

Thank you. I think I'm shocked, which is why I've put lying. The consultant did know that the injection didn't work, so I cannot understand why he wrote something different. It may be an oversight, he may have felt confident that the surgery would have fixed the problem (although he did say it would be a year before we knew if it worked, and it's over that now and he's not seen me, except the brief minute last week).

I understand that I shouldn't accuse them of lying, it just feels like that.

I'm not sure how they misunderstood my pain as I've seen them every 6 weeks since the operation and have always used crutches and complained of pain. However this is the first letter that they have written to the GP, so as far as the GP knows I haven't seen them since the operation.

I will calm down and write it out over the weekend. I think I will ask to see another surgeon. Everything that has been said to me, the opposite has been written to my GP.

@LIZS thank you, that makes perfect sense. The missing documentation is probably the best way to word it.

We’ve had similar with my daughters care with her gynaecologist, absolutely disgusting, blatant lies. Now due to his methods and gaslighting she has CPTSD, we’re making a complaint just so he knows what a shit he is, he absolutely loves himself. After one laparoscopy she subsequently had an infection, it happens, they even give you a leaflet which mentions the possibility. On her follow up appointment the little shit banged the desk which shifted him in his wheelie chair and angrily stated that she couldn’t possibly have caught it on his operating table! On her medical records he stated that she must have caught an STD 🤬, you really want sex with a stranger straight after having endometriosis removed, yeah right. Her G.P advised her to ignore him 😡, no fucking way.

A friend is willing to help her compose the complaint, we get very angry and it would be very emotional, she was under his care for 5 years, there’s a lot of damage. We want it to be professional so they take notice and kick his fucking arse!! Little twat. I’m really angry, it’s affected me as well. I really don’t trust medics anymore. My daughter is under a psychiatrist and on medication as well as waiting for counselling for trauma. I’m very, very angry and perhaps need some myself.

Whatever you do don’t give up, if you have anyone that can help you, all the better. They are not gods and need to be accountable for their deceit. I’d never have believed it if I hadn’t witnessed it myself, it’s very distressing and traumatic. Kick his arse, don’t let them get away with it. I found a consultant in another hospital for my daughter and he was lovely, so different. You’re entitled to a second opinion, ask your G.P to refer you to someone else, preferably one that isn’t a colleague of the initial consultant. We had that as well, it felt like the bloody masons.

@Snippit That's horrendous! Your poor daughter (and you). She's lucky to have a strong mum advocating for her

It sounds like a case of misunderstanding , and perhaps writing the letter at the end of a rushed clinic rather than lying.
One option would be to write to the consultant, copying in your GP to say that you wished to clarify a mistake in your notes. State the situation objectively and say that you do not feel comfortable proceeding with surgery given these important errors. I would ask to see the consultant again to rediscuss. If you don’t get any joy then I would ask PALS to help .

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@olympicsrock would it be OK to do that via email? I will also mention the injection that didn't work, as DH was with me when I said that.

I've got the consultant's secretary's phone number, but don't want to discuss it on the phone, as then it isn't recorded.

When he told me that the operation may not work as my tibia and ankle also needed doing, he said this in person, but said the opposite in the letter to my GP.

None of the previous appointments have been recorded, so it comes across (to what my GP has been told), that the injection worked. Then the fusion worked, I was able to run around and was in no pain, but have recently had some pain, when the truth is I've been on crutches ever since and the pain is relentless.

I will format a timeline, explain what has happened and be polite, but explain what was said to me and my symptoms.

What is also strange (and noted by physiotherapists and family), is that my toes on that side now 'claw' the ground, and have begun to splay. I'm sure this is because the arch is too high (only the tips of my toes and outer part touch the floor). I tried to say this to him last week, but he just told me to get on the bed, felt my foot and said operation next week to his underling. My toes on that side hurt like hell too, and removing metal will not solve that.

I've just looked through my GP's notes online. He initially said he was going to do an osteotomy, based on the malunion of the tibia and significant disease of the medial tibiotalar joint, as well as talonavicular.

I've found the letter where he states that my symptoms significantly improved after the injection, though I can remember clear as day telling him it made no difference. He said to me at that time that I would need to have the tibia straightened as well as fusion.

He said that the day before my surgery that my ankle was now supple and cured, so wouldn't need treatment???

They say in the latest letter that the subtalar is very still and I walk with an antalgic gait, this has been the same before and since the surgery (and I've now got hip pain if I walk more than a little).

I'm not sure how they're suggesting the subtalar and gait is caused by the metal, or why they think it will cure it, when I've had it before and since surgery.