This question is directed to people who received bad treatment from one doctor, left them and got better treatment from a different one. Have any of you gone back to the old doctor and informed them of the help you're getting now? When I finally get a treatment that works, I'm going to write follow-up letters to everyone who dismissed my case. I'll inform them of my final diagnosis, give details of the treatment, and provide numerical evidence of my improvement. Perhaps with photocopies of letters from other doctors backing me up.
We leave bad doctors and they continue to mistreat other patients in their ignorance. One letter probably won't help - but imagine if they got a flood of them. Our opinions don't matter to them, but the opinions of specialists (and medical evidence) do.
Has anyone actually done this? I'm interested to know what the response was
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NightBird
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I made a formal complaint about a neuropsychiatrist. Some issues I raised were validated in the response. Haven't been able to get a referral accepted to see a different neuropsychiatrist since.
I've made numerous complaints about poor/bad treatment I've experienced from different health/medical professionals in the past.
I've either had an apology from them or they've refused to treat me.
I ended up changing GP surgeries twice once because of poor/bad treatment & the GP(s) refusing to treat me because I'd complained & the other time (first) took me of their list all because I'd poor personal hygiene due to a medical problem that had been identified by previous GP practice I was at whilst I was still living at my mums. I even told them this when other patients at the surgery started to complain about my poor personal hygiene to surgery staff & asked for my medication to control the problem but of course they didn't do this by accusing me to my face of lying, when I wasn't! It's on my medical records!
Yes, however too many of the "attitude" doctors have the "I am God complex" thinking they are the ultimate authority, don't confuse them with the facts, their minds are made up, and are unable or unwilling to see anything other than how they see things are. Maybe I have a bad attitude about these type of doctors, but I think it is a damn good one. Haha. You may have heard of this saying a doctor convinced against their will is of the same opinion still. Any way its probably more beneficial to post the things that worked here with other experts and on other helpful sites for those of us with brain injuries and their carers. Another thing I've learned about what to do about doctors that don't work very well with you is to basically get away from them without criticizing them. Unfortunately, some of them are very weak and insecure and don't take kindly to being criticized and tend to take revenge on you by making sure they make it more difficult for you to get the care you need. If in fact they are harming patients a lawyer should be engaged to take legal actions to get them stopped.
Yes but theres corruption in the legal system too. Not many cases are even getting to court for their severe injuries now because they are being downgraded by medico-legals I’m afraid. It seems to me that there is an evil undercurrent going off which is going to cause two distinct societies. The rich and powerful, the poor and needy. Maybe the GP’s are stuck in the middle I don’t know, they are getting deprived of their resources that’s for sure.
Yes this is a tricky one! I had to change GP practices because I was not getting anywhere and then a GP was rude to me. The new practice and GP are in fact much better. I think I might write with the full diagnosis when we get there but on a FYI basis...
I have and haven't :-). It seems to be about luck and the best people take it on the chin without resorting to defensive behaviour. A neat feedback loop like you've described would be wonderful. I'm seeing the better teams and organisations do this and ombudsmen and funders seem to want to, which is a start at least. I've experienced outright denial through to profuse apology and real actual change.
I do find I'm politicking in situations where that's an extra hoop to jump. I'd like to say I'd sat down with X and Y medic/professional (not that they're necessarily mutually exclusive) and explained how some advice/treatment is useful and others are the opposite. And be trusted and heard. This is notoriously what you can't do quickly/informally but I have been successful on occasion. I hate confrontation but when it works it's a real boost. Power balances are very poor sometimes and being sent down PALS or complaints processes is intensely annoying when good communication can get things done before, better and quicker, or sadly at all. Rather surreally I've written (formally) from an inpatient bed and months later received a good outcome about staff, treatment or procedures etc. I'm concerned at being too critical and misunderstood but think and know it needs doing for the reasons you outline. I know one, ahem, who shall remain nameless, was retrained and I'm pleased and hopeful that no other patient will receive the abominable treatment I did.It's frustrating that referring to policy, best practice or law is necessary to shape treatment but I'm not giving up as it helps all of us - family and friends as well as patients and providers.
Timing is key? I'm trying to heal and recuperate and haven't the time, energy and ability to achieve the outcomes I'd like. I guess everyone says that!? That's why this forum is great to seek support on where and how to gently push back in situations.
It's often an adversarial system and my wish for 2017 is that it's...not!
Hi Nightbird, yes I’ve done similar on the legal side. My medico-legal Neurologist lies on the medico-legal report. He committed perjury by lying, said I had long term balance problems before my accident, which I definitely didn’t, my medical records prove it. He stated I had a mild concussion for 1 month only, when I was actually issued with a TENS machine for severe 24/7 headaches two years post injury. He admitted he didn’t even look at the upright MRI images which I’d had to pay £1200 for, and the biggest insult, he finished by saying I had no physical injury. I have cranio-cervical instability, brain herniation, dropped clivo-axial angle which is pulling my brain stem over, plus others. I hand delivered a letter to the hospital where he works. Outcome: He threatened to do me for harassment and contempt of court. So whatever you do you can’t win. We are left impoverished and to pay our own very expensive medical bills.
That's disheartening. I've been symptomatic but MRI-negative for years, so I keep going back for referrals to different neuros. I'm slowly building up evidence that this case is physical instead of psychological as they claim. I always thought a correct diagnosis would be "the final victory". Seems like it's barely the beginning.
I’m trying to understand how your injury happened, was it some form of reaction you had to the injection. Do you think it was your body’s reaction that caused the brain damage or dread to think of it, could there have been something wrong with the batch? Or maybe too much of the serum? I suppose these are the questions you need answers to.
It could be any of those things. If the batch was dodgy, there would be other cases, and if it was badly administered there might also be. I did try Google searches for other cases around the same time, but there was no luck. The MHRA Yellow Card scheme is a one-way system: I can report an adverse reaction, but can't search the database for other people's reports.
I suspect there would be no help from that route anyway. When I told them in 2005 that my symptoms were a vaccine response, I was swiftly shut down because they "weren't on the standard list". (Even though they were accompanied by others that were). I found out independently about the Yellow Card scheme in 2016. That's not a typo - it really was eleven years later. So if that's an indication of how many serious reactions make it through, there wouldn't be much to learn from Yellow Card data even if it was accessible.
It's possible that I have a genetic susceptibility. The way to test this would be to get my DNA analysed on 23andMe or something similar, and test a pool of other people who responded the same way to the vaccine, and search for similarities. This would be a real independent research project, and obviously beyond my current capacities. If and when I get treatment I will be considering it. That's the catch-22: to research my losses, I need the abilities I've lost!
I’m sorry, it’s proved so difficult to find answers. It’s so sad that there’s very little information you can get hold of because of closed ranks. It’s your life, you only have one, and like me, your extremely unsupported. This country’s NHS is a shambles, we just have to try and make the best of what’s left. 😢
I've moved a few times since my TBI and some GPs have been great but none of them have known a lot about TBI, I've no problem with that.
However my new GP practice has provided me with a very different service. Firstly you need to appreciate my GP practice is a one minute walk and the alternative 45 minutes.
Face to face with the main partner following registration and he told me I don't have a brain injury. I pointed out my medical history included a hemorrhage, he insisted that's not a brain injury??? I kept my cool and asked was he a GP, not a good start!!
He's now retired and my named GP is worse. The second time she told me "There's nothing wrong with You", I adopted my court persona remained totally calm and said "You're a GP and not qualified to give that diagnosis", priceless looked like she'd just bitten into a lemon.
Never seen her since and all other GP have been great, I suspect my file has a flashing red light "Difficult patient!!!".
I don't see any point in seeing a GP regarding my TBI so it's not a problem, not enough to walk 45 minutes in the rain anyway.
Would I complain about service, no I know enough to know that it's not going to change the behavior of such GPs and the best you can hope for is frustration. Having said that I did complete the GP survey on the NHS site, again probably a pointless exercise.
Personally I think local Headway should be addressing these issues with GP practices in their area. This is something I've done, any GP practice manager should be enthusiastic about setting up someone to do a presentation with a Q&A session.
I've got better thing to do than fight a soul destroying battle myself.
I'm still dependent on GPs because I haven't got that all-important diagnosis. Once I have, they can go whistle. My file says "medically unexplained symptoms", which means hypochondriac, or might as well do.
The gatekeeper system is ridiculous, isn't it? They don't know enough to diagnose a brain injury, but they somehow know enough to state with certainty that you don't have one... How on earth does that work?
It's a common phenomena and can be found in lots of Professions, confidence is 50% of doing some jobs well but it has some fundamental problems when confidence meets stupidity.
Hells bells you’ve hit the nail on the head Nightbird! 😀. And just like WAD stands for Whiplash Associated Disorder. Which is not descriptive of any actual injury, I prefer to call it Wave A Diagnosis! Look after yourself my friend because these people obviously aren’t. Xx
Your right they know nothing about anything when it comes to TBI. For one thing, fancy telling someone suffering vision problems after a head injury that they need glasses, severe headaches told to take paracetamol, prescribed antihistamines for copious fluid running down nose and back of throat. Eight months before they would refer me for a scan. I’m not a Doctor but it would ring alarm bells with me! Not even a whispered referral to Headway, which costs the GP nothing. Honestly, What do they learn at Medical School?
Do you ever have naughty thoughts and wonder 😳, if these denying GP’s suffered a brain injury, how they would feel as they tried to get a Doctor to believe their story. Do you think they would then have a guilt complex?
I was having multiple seizures probably 20-30 admitted to hospital discharged next day after chest X-ray?? Everyone knew I had AVM with prediction it would kill me within 11 years due to high risk of second bleed.
I did a disservice to GPs as it was actually 1 hospital doctor and 3 GPs
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MRI Scans - What do multiple high intensity signal areas on an mri scan mean after sustaining tbi?
Feeling at a dead end.
PIP Appeal - Further evidence letters
