I was diagnosed with acquired brain injury and multiple neurological symptoms secondary to chronic carbon monoxide poisoning in 2020. I spent 6 years begging my GP for help from 2014. Seeing several GPs at the same health centre. One of the GPs said to me, I do not know anything about carbon monoxide or its after affects.
To cut this exceptionally long story short, after having to continue my fight to be heard I was sent to a neuropsychologist in 2019. I honestly thought thank God. Now doctors will see that my brain is not right.
His questions and tests would have been easy for me before brain injury. I ran my own holistic practice for many years and had an amazing memory. I found myself perplexed when his first question was.
“Is this to do with a court case” My reply was yes; I am taking the people to court because they could have killed me, and I am concerned that many other people could be in the same situation as I was. But I am not here about my court case, I am here seeking help.
He did several tests, one where he flicked through a set of cards like a magician. He flicked them so fast that no human could see or be able to retain them. I am extremely sensitive to noise and found the sound test unbearable. I found retaining his questions difficult because of my short-term memory problems. After two hours it was over, I found his attitude towards me humiliating. He could barely look at me when he spoke.
I waited to hear what the results of these tests would be and ended up going to my GP asking what they were. She printed a copy for me, and I could not believe what I read. It said “NOT FOR OPEN ACCESS” The neuropsychologist had written on every test that lack of engagement was on my part. He even wrote, people with dementia don’t score this bad. I read the report so many times and thought that maybe I was reading it wrong.
I soon realized that now I had a report on my GP records that was completely unfair and any doctor reading it would believe it.
I made two informal complaints that were ignored I wanted this report removed from my medical records. He refused to do it. I ended up making a formal complaint. The neuropsychologist said in his response to my complaint, that he only asked in passing was I going through a court case, and he found it difficult to make an assessment on my tests. So why write such derogatory remarks about me.
I now honestly believe that this neuropsychologist was more concerned that I was involved in a court case than looking at how severely I had been affected by carbon monoxide poisoning.
Suffering brain injury is bad enough and I am fighting this court battle alone because of cover ups that went on. I cannot stop until I get justice, not just for me but also for the many other people who could be in the same situation that I was in. Carbon monoxide alarms do not sound at low level and I was been poisoned for months before finally collapsing. My MRI brain scan revealed multiple lesions from carbon monoxide poisoning.
My question to others here at headway, has anyone else ever experienced such an uncaring attitude from a neuropsychologist or doctors when they have gone to seek help? Am I the only one who has had to fight to be heard and to be believed?
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Most neurologist I have met have been ok, but I have come across a couple that were dismissive of my symptoms from the off. I have never met a neuro-psychologist, that has made such subjective and unevidentual claims.
You did the right thing in this case in making a formal complaint, you can escalate the complaint up to his professional body if you feel that the Trust does not adequately addressed your concerns. Contact PALS for support.
Even if he genuinely believed what he wrote, it is not a professional diagnosis, and demonstrates at best poor practice, but it goes deeper in the fact that he has shown bias and discriminatory beliefs.
This neurophysiologist who made the derogatory comments about me hurt me deeply. I went there thinking I was going to finally get help. I was devastated by his comments. I was before brain injury a private therapist and now I cant even spell without spell check. I will have to find out how to have the comments that he put on my GP records removed. I am not sure how to just yet.
I do not think that he expected me to make the formal complaint. But when my two informal complaint's was ignored, it made me more angry. I guess putting this report in as not for open access made me even more upset, because it was hidden only to be seen by doctors and that is not fair.
May I ask who are PALS? I could do with support but because of my neurological issues, I find it difficult finding my way around when I search for help.
I will be escalating my complaint about him. People need to be heard especially when they suffer from brain injury.
Thank you for coming back to me, I really appreciate it
Hi, I used to be a nurse mainly in forensic mental health, but as you do, I have been around various services, especially as a Lead. Our note's were open to scrutiny by the patients until we went computerised, then it got harder to show patients as you couldn't carry a computer around. Patients could comment on their own notes, again became harder with computers, as patients didn't have computer access. The only parts that could be restricted were witness comments or if relatives made comments. It did focus how you wrote notes, and prevented inappropriate comments.
Got to admit I have not come across anything noted as the comments on your notes. Having said that, I am not sure you can have something removed from your records, but a correction could be added.
PALS, is the Patient Advice and Liaison Service, they are employed by the Trust, but act independently to support patients in cases like yours. Every Trust, big or small has to provide this service. PALS officer will be able to advise you about the complaint, expected outcome, etc.
Hello again, and thanks for the PAL info.Many years ago, I asked to see my old medical records and I was allowed to read them while sitting in the reception area.
You are right, since everything has gone computerised people have no idea what is been said about them. I really never minded what was said about me providing it was true, but none of what was said in that report was true and his reply after my complaint made it obvious that he never expected me to go further. I just don't want any doctor judging me on his report when it was just so wrong.
I will keep up my fight and hopefully have it removed asap. 😊
What an appalling experience. You should have never have had to go through that.I suffered my brain injury in hospital five years ago when a surgeon decided not to follow mandatory procedures and my brain swelled. The surgeon told me what happened but then lied on my records and every other doctor refused to believe me and went along with the surgeon.
It took me over three years to find a GP who believed me.
I can't write any more right now as my cognitive fatigue is really getting to me, but I will get back to you.
Hi Marnie I am so sorry to hear what happened to you.It is unbelievable how some doctors can try to hide and lie when they do wrong.
I think it makes it so much worse when we are not believed.
Having to visit one GP after another and not be believed is just terrible.
I think that some doctors assume they can say or do whatever they like no matter how much it can hurt people.
The report that was written about me was hidden, only for doctors to see.
I still don't really know if the GP printed it for me to see what was said, because she herself believed what he wrote.
I got so upset that I decided to bring 3 forensic reports all saying I was lucky to be alive, including photographic evidence to this GP and asked her, if she would have a normal brain after breathing low level carbon monoxide poisoning in an airtight room for months.
Within a short time I seen a neurologist and finally in 2020 had the MRI brain scan and had my diagnoses. I don't think that I am wrong when I say that this appointment should have happened in 2014. It would have saved me from a lot of humiliation trying so desperately to explain what happened to me and not be believed.
I hope you have a restful day, I know how exhausting things can be.
Sorry to hear about your experience.I've had to wait 37 years for a neuropsychology assessment from the NHS, after having my MP involved last year, I've had 6 appointments every fortnight of testing which finished two weeks ago. I get to see the results and discuss them with the Psychologist next month along with my wife. Fortunately my Neuropsychologist has been very human.
Your right about not being believed, that's been the worst part of living with my TBI sequelae. I've discussed this with the Neuropsychologist and she's surprised that my post TBI condition was dismissed. I made the point that I would have to be a complete freak of nature to have suffered an extradural haematoma, undergo an emergency craniotomy and have no after effects; "Once the air hits the brain it's never the same" is even the title of a book written by a neurologist. Somehow I was diagnosed with every other mental illness before Autism Scotland pointed out the obvious in 2017 when I was sent there for an assessment.
On top of that the OCD I was diagnosed with in 2000 is not OCD, it's perseveration and some of the alleged OCD is purposeful; I arrange and order things to help me keep track of them. This means that being on 60mg of Fluoxetine for 12 years, 100 hrs sitting opposite Psychiatrists and Psychologists for OCD treatment, and 4 weeks in patient treatment for Exposure and Response therapy (ERP) was just kicking the post TBI can further down the road.
You could post your story on the Care Opinion Forum:
The health board(s) concerned are obliged to respond.
As for medical records, if any records are in digital form, you have a right to see them under the Data Protection Act and you contact the health board's Data Officer with a Subject Access Request. The Citizens Advice Bureau website have template letters for this purpose. You have a right to have any errors corrected and it has to be exceptional circumstances for them to withhold any records you ask for, even then 9 times out of 10 an appeal will give you access.
I wish you well on your fight for Your Lived Experience (Truth) versus their 'relative truths'.
The next 15 rounds of my own fight is about to recommence after I get my report.
My goodness, 37 years waiting. I am so sorry to hear of your own shocking experience's. I do think sometimes that if just one decent GP listened, it would make a difference.
Sounds like you have a good Neuropsychologist.
I know that not all doctors are as rude and uncaring as some of the ones that I have met.
But I also know that they tend to go with what is written by others and that is what I find offensive. Every person needs an unbiased opinion. Writing opinions before a diagnoses is wrong.
Sadly we depend on the GP to refer us to where they think we should be going.
And they can take a long time to do that and do not always get that right.
We as the patient, live in our bodies.
When something goes wrong we know it before anyone else.
That is why we seek help. It is insulting when they decide not to believe us without investigating the symptoms that we go there with.
I begged for help, I knew that I needed to see a neurologist way back in 2014. I was sent to a physiatrist. He was a decent doctor, I was diagnosed with PTSD. He even wrote in his report that he believed I could have been killed. I do not think that some reports are even read by some GPs.
So that dealt with the trauma side of things.
But it also had a slight negative side to it.
It allowed for the GPs to assume, that PTSD was my main problem.
My worrying symptoms where from chronic carbon monoxide poisoning and they where ignored.
Like yourself, I also seen phycologists.
They where very nice people, but how could they help when they also would rely on what they where told by a GP about me.
My constant reminding them that my brain was not functioning properly was a waste of time.
I have also learned through my experience that if I dare say, "I know my own body because I have lived in it long enough" some GPs take offense.
I have been with this GP practice since 2014.
If they looked at my medical records before I moved here, they would see it says infrequent attender.
I rarely visited my GP in Birmingham, many years would go by and I never needed a GP appointment.
It looks like you getting a MP involved has made things move for you.
Can I ask you, do you think getting an MP involved makes the NHS sit up and listen more?
My goodness you have had a long wait to get help.
I hope that you get results that will help you with your own fight. Never give up 😊
I wish you well and thank you so much for the links, I will take a look.
Most of my own back story is there in my profile and yes it all hinges on my first GP visit after coming out of hospital, notwithstanding the hospital aftercare was non existent.I was 17 at the time of my TBI back in '84. I went to see my GP along with my parents about my headaches and 'not feeling right' after my accident. The GP prescribed paracetamol for the headaches and 'a good kick up the backside' for the 'not feeling right , which he had diagnosed as teenage malingering to go with my chronic fecklessness. Obviously not a good start for life with a TBI.
Six weeks after my operation they had me sitting my final exams for school, and the school's main concern was that I would be breaking the uniform code by wearing a hat that they insisted on, in order that a shaved head and a skull full of dents and a large semi-circular scar wouldn't traumatise those delicate younger schoolkids.
The general attitude from family, medics etc throughout my entire adult life has been that a TBI and brain op is no different from a broken wrist and the subsequent mental health problems were down to sheer ingratitude for being a Glaswegian.
Note: my sarcasm and humour has helped me survive this more than any meds or therapy.
Despite was has come to light in recent years, it has taken NHS Scotland a further 4 years to get round to assessing the problem . Moreover, I've also had both an ADHD diagnosis in December 2020 and a Dyspraxia diagnosis in March 2021 so I've also been living that for 54 years (which probably explains the chronic fecklessness). My parents and 6 younger siblings still maintain there is no problem other than indolence, ingratitude, fecklessness and malingering. Nothing a good haircut and some sensible attire couldn't cure.
MPs have channels to the top of NHS management that we mere mortals could only dream of, so the answer to your question is a resounding YES!
You have the entire empathy that every bone in my body can muster.
Whether it's not being believed for 37 years, 10 years, 4 years or 37 weeks, it doesn't matter. That feeling of isolation hurts more than the worst that any brain injury can throw at you. As Satre put it "Hell is other people".
The only advice I can offer is keep talking to as many people who understand as you can and you will find plenty on here to vent with. It's far better out than holding it inside and corroding your soul.
If need be you can pm me to vent, I not always up for an immediate response but will promise a reply within a week.
Sorry for my loquacious reply, I'm in rant mode today.
Gosh you have been through so much.hopefully the MP will make a huge difference for you.
I will be checking out an MP to see if I can get further help.
I cannot help getting upset when people are so unfairly treated.
There is nothing more healing than been heard and believed.
Only people who have had to deal with similar situations can understand what it is like. I would rather be the person I was before any of this ever happened to me.
I will come back to you Michael, I have been in terrible pain for a few days. Just typing is difficult for me this morning.
I’m afraid to say that living in our society sadly, even in the medical profession you will find uncaring people and many lies being told to cover their own backs or that of their colleagues this happens from the top down.When you have an appointment always always taken someone with you.
We have experienced this with our 33yr old so who has TBI (2020). Who himself was medical, as too is his sister and my husband. So we know having experienced firsthand lies written about consultation.
Our son has received very little help. Any progress that he has been made started after he got out of hospital. (May I say without a care plan too.)
Mostly because of ourselves being here help.
Its hard going having had a craniotomy, has left him not being able to read, which was a passion of his. We have someone ( a good friend who offered to help him). other than that he listens to audio books.
The amount of appointments that have been cancelled is unbelievable, which isn’t right. Someone with a TBI doesn’t seem to handle such changes.
As we’ve found he rants, and he goes on about the whole accident and all the things he can’t do, and misses. Lack of purpose and progress is depressing for him. He was always a high achiever.
Covid being around doesn’t help. The medics and support workers seem to use this as an excuse and hide behind this.
Yet, I see my husband and daughter in the front line seeing patients face to face. They’re often very late home because of referrals that need to be taken care of well after the working day is over.
I wouldn’t wait for an apology from the NHS but I do hope you get your records corrected, you know you can ask for copies of your records.
I am so sorry to hear about your son, it must be terribly difficult for him and of course your family.It is so wrong when people are treated so badly, and insulting when they try to cover up.
You are right, I agree with you when you say medics and support workers seem to use Covid as an excuse.
Even making a simple phone call to get a GP appointment these days is horrendous.
They say call at 8.30am
The phone lines are permanently engaged, and if you strike lucky and it rings, usually way after 9am. Then you are told its too late no appointments are left.
Nowadays if lucky, you get a GP to call you, just to check what's wrong.
It took 6 weeks for me to book a call for a GP to phone me at home.
Getting the receptionist to hear that you need help is frustrating because I do not think we should have to tell a receptionist are private details.
And even as in my case I do. It makes no difference.
I had a full blood test on Monday.
The Dr surgery was empty, a big sign on the door telling people not to come without booking.
My white cell count is very high, GP rang me Wednesday to tell me its higher than it was a couple of years ago. When I asked why I was never told, she changed the subject.
Now I have to wait on an appointment to see a rheumatologist.
I have a copy of my medical records up to 2016.
But I will be asking for another copy to see what is going on.
I am sure your son finds it so difficult to have such a huge change in his life God bless him.
I hope that he can get the appointments that he needs.
I also had to fight for help. I had to beg to get referred to my local brain injury unit, took a year. Took another 8 months on top of that for my first neuropsychologist appointment. Again, I had to beg. After testing, he wouldn't treat the identified cognitive deficits because 1) I was never unconscious, 2) I have some memory of hitting my head & 3) I had a clear CT scan. It's that black and white, he was very blunt in also reminding me I am high functioning and he has others worse off. Wouldn't refer me for an MRI. Gave me three appointments to supposedly discuss what was next for me, where he could sign post me etc (didn't) and sent me on my merry way. He is retiring this November, believe me I was not of his concern at all. I just wanted to get the appointments over and done with to move on, so I did. His report isn't factual based on the information I sent him previously but, I have the areas that testing identified so I can/will work with it.
I have to rely on a charity who thankfully (I am very lucky to have been referred to them - I am now unemployed and was part of a condition management program, they referred me) have been fantastic in supporting me and will help me work on my brain farts. The NHS in NI have failed me big time, I don't envisage going anywhere near my GP again...ever.
Hi, I am sorry to hear of your bad experiences.I am in desperate pain at the moment its difficult for me to type on PC, but I have to comment that it is disgraceful how people are treated.
I notice you are in NI?
Me Too.
I have to be honest NI is the worst place to get help from my own experience's.
I cant help but wonder if you went to the same brain injury team as me and the same neuropsychologist.
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